The ERN Call for proposal 2016 was released on March, 16th, with a deadline on June, 21st. This first ERN Info Day aims to gather all stakeholders interested and currently drafting ERN proposals to explain the Call as well as to answer all questions.

The EPF conference “Patient and family empowerment for better patient safety” will explore these issues, including:
•The ethics of patient involvement in safety: taking responsibility or being burdened with responsibility?
•Challenges for patient empowerment and involvement in acute care settings
•Challenges for healthcare professionals: is a fundamental culture change needed?
•Communication: a risk factor or an opportunity to improve safety?

All info here

All information and registration here

The aim of the conference is to disseminate the findings from the RARE-Bestpractices project and offer a forum for discussing with relevant stakeholders how this work could be taken into account in delivering better health decision making and health policies for rare diseases.

More information and registration here

The conference will specifically celebrate the 10^th anniversary of the UN Convention on the rights of persons with disabilities. Presentations and discussions will focus in an interactive way on the progress which has been made in the EU to promote the rights of persons with disabilities, based on the UN Convention.

All information here

Conference Call meeting of the VASCern ePAG representatives, organised in cooperation with EURORDIS.

During this meetingn, the European Commission will inform ministers on the European reference networks.

More information here

Programme and contact for registration available here

Read the recent review paper on Fibromuscular Dysplasia and the European FMD initiative , a collaborative research coordinated by Prof. Alexandre Persu, Cliniques Universitaires St Luc, Brussels

The ERN Board of Member States (maximum of 2 representatives from each EU Member States and EEA) and will meet on December 15th to take the decision on the approval of the Networks and HCPs positively assessed by the Independant Assessment Body.

Read the Rules of Procedures of the Board of MS of the ERNs

More information on the BoMS here

The main philosophy of the meeting will be unchanged and our mission will be to offer to the participants an update focused mostly on the practical aspect of vascular surgery through a dynamic format based on rapid paced presentations.

All information are available here

Prof Guillaume Jondeau will present VASCERN at the 20th Turin Meeting on Rare Diseases (ERN Roundtable). The European Commission as well as 5 other ERNs will be there and make presentations!

The third conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France.

All information here Programme here Registration here 

"The event is the first of its kind to be organised in Geneva and will gather international experts in the fields of public health, human rights, epidemiology, scientific research and patient advocacy to discuss why and how rare diseases should be included in the global health agenda."

All information and registration here

VASCERN Vascular Anomalies (VASCA) Working Group Members first meeting as an ERN group

A special event on Marfan Syndrome and Loeys-Dietz is organised by the University of Antwerp and Bindweefsel.be. More information here

All information and registration  here

How to get involved and support Rare Diseases Day 2017: here

All information available here

The European Commission organises a ERN journalist study visit at the University Hospital of Leuven. Prof Guillaume Jondeau, VASCERN Network Coordinator and Dr Sarah Thomis, Univ. Hospital of Leuven HCP Representative, Member of the Pediatric and Primary Lymphedema WG (PPL-WG) will present VASCERN, together with a PPL Patient representative (Be-Lymph).

All information and registration here

Watch the video for the World Lymphedema Day! 

The European Commission (DG Health) organises the 3rd European Reference Networks Conference on March, 9-10th in Vilnius, Lithuania.

The ERN Conference will focus on the presentation of the newly 24 approved European Reference Networks, and will be the official launch and start of ERNs (see here the list of approved ERNs).

There will be an ERN awarding ceremony, introduced by the EU Commissioner for Health, Vytenis Andriukaitis, who will also open the ERN Conference.

The conference on 9th will tackle topics such as:

• Coordination, management & governance of ERNs;
• ERN IT platform as core element for eHealth, telemedicine, sharing of expertise in complex clinical cases;
• EU policies and support to ENRs (research, registry platform, rare diseases policy…);
• ERN and national healthcare systems;
• The way forward with perspectives of Healthcare providers, patient representatives, ERN Coordinators, Member States.

On March 10th, the 24 new ERNs will officially start working with a kick-off meeting!

VASCERN will hold its first face-to-face Council kick-off meeting on 10th, with a part of VASCERN HCP and Patient representatives (Chairs and co-chairs of VASCERN Working Groups).

Agenda here

All information and live webstream on March, 9th here

This high-level workshop is organised by the Maltese Presidency of the EU Council of the European Union at the Grand Master’s Palace , in parallel to the informal meeting of EU Ministers of Health. The Maltese Presidency has established Rare Diseases as one of its core priorities.

European Reference Networks will be represented to this meeting.

"The aim is to discuss the possibilities for structured cooperation in rare diseases research, tools, and healthcare at the EU level and ways of adapting already existing programmes by scaling them up and integrating them under the same umbrella, creating a sustainable ecosystem of knowledge generation."

The European Commission organises a Workshop on Rare Diseases Registries in Madrid (March 21-22nd), on the dissemination of the 2008-2015 Health Programme results. This is organized in cooperation with the Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III - Spanish Ministry of Economy, Industry and Competitiveness. The event will disseminate results of the EU Health Programme co-funded conducted projects and Joint Actions on Registries.

The future European platform on Rare Diseases Registration, as well as Registries through the European Reference Networks will be tackled.

Registration until March 20th here

Agenda here

Organised by Rare Diseases Ireland. Info and registration here

The eHealth WG, Chaired by Dr Alessandro Pini, Representative of our Member Centro Malattie Rare  – Marfan Clinic, Milan, Italy, will have its first monthly virtual meeting on May, 2nd. The agenda includes the development of our VASCERN Mobile Application for cross-border healthcare. This Mobile Application (for IOS and Android Smartphone) will enable patients and professionals to easily find all necessary contact information about the expertise centers in rare vascular diseases.

Meeting organised by EURORDIS with the Patient Group (ePAG) on the development of the ePAG and EURORDIS support

More info here

Info and registration here 

Save the date! All information about the meeting and the patient fellowships are available here

More information and registration here

This workshop is organised by the French Ministry of Research.

VASCERN will be represented at this workshop.

"ERNs need to be able to demonstrate their impact across a broad range of fields and activities, which requires carefully-selected indicators and at the same time a monitoring system including Key Performance Indicators should be set up to follow up the activity and caseload of the ERNs."

VASCERN ePAG (Patient Group) representatives are meeting every first Tuesday of the month at 10am (GMT+1) in order to work together, share views and be involved in all VASCERN actions.

VASCERN eHealth-WG monthly "virtual" meeting takes place every first Tuesday of the month at 5.30pm (GMT+1). The eHealth-WG works on all the transversal eHealth topics. The WG is especially in charge of the development of the VASCERN Mobile Application, which will facilitate cross-border healthcare and pathways throughout Europe in rare vascular diseases.

In the framework of the Cure HTT 12th International Scientific Conference held in Dubrovnik, Croatia on June 8-11th, our VASCERN HHT-WG Members will have a first VASCERN HHT-WG face-to-face meeting.

Abstract submission here until February 28th

This International event will gather world’s leading HHT experts in both basic research as well as clinical practice, including our VASCern HHT-WG Chairs and Members.

Hans Jurgen-Mager, MD, PhD, HCP Representative and Member of the VASCern HHT-WG is also Co-Chair of the Cure-HHT Organising Committee for this international meeting.

All information and registration available here

VASCERN VASCA-WG Monthly "virtual" meeting takes place every 2nd Monday of the month at 7pm (GMT+1). The VASCA-WG (Vascular Anomalies) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

The VASCERN Ethics-WG first virtual meeting will take place on June 14th.

On June 20th & 21th, there will be a Joint meeting of the ERN Board of Member States (BoMS) and the ERN Coordinator's Group (ECG). Issues such as: call for new ERN members joining existing networks, affiliated partners, monitoring of ERNs and relationships between ERNs and Industry will be tackled.

There will be a training session on the clinical case management system.

The ECG (ERN Coordinator's Group) will meet and discuss issues such as Governance, ERN IT system, eHealth call for ERNs, research, health programme, monitoring & assessment of ERNs.

VASCERN HTAD-WG Monthly "virtual" meeting takes place every 4th Monday of the month at 5pm (GMT+1). The HTAD-WG (Heritable Thoratic Aortic Diseases) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

The next VASCERN PPL-WG Monthly "virtual" meeting will takes place on Monday 26th June, at 5pm (GMT+1). The PPL-WG (Pediatric and Primary Lymphedema) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

VASCERN MSA-WG Monthly "virtual" meeting takes place every 4th Monday of the month at 5.30pm (GMT+1). The MSA-WG (Medium Sized Arteries - Vascular Ehlers Danlos) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

All information and registration here

In Prague, over two days, 14 leading experts will review recent advances across the spectrum of cardiology. Interact with colleagues, exchange information and ideas, and get updated – helping you to provide the best care for your patients!

Programme: here

All information and registration here

Monthly meeting of the VASCERN Pediatric and Primary Lymphedema WG.

More info here

In the framework of the European Society of Cardiology Congress in Barcelona, the VASCERN HTAD-WG will have its monthly WG meeting in person.

International Symposium of Vascular Anomalies.

http://eadvgeneva2017.org/

VASCERN will be represented at this international summer school.

More info here

The Aortic Dissection Awareness Day in Milan is organised by our Member Dr Alessandro Pini. VASCERN will be presented! All information on the programme here

Info on the Aortic Dissection Awareness Day

The Aortic Aneurysm Symposium is organised by our HCP Member Prof. Bart Loeys, from the University Hospital of Antwerp (Belgium), in cooperation with Prof. Jolien Roos-Hesselink from the Erasmus Medical Center (Rotterdam, The Netherlands). Several of our HCP Members from HTAD (Heritable Thoracic Aortic Diseases) will make presentations: Prof Julie De Backer (Ghent University Hospital), Prof Yskert von Kodolitsh (University Medical Center Hamburg-Eppendorf)

More information:

FlyerAntwerpenmeeting

The European Society of Vascular Surgery organises its 31th annual meeting in Lyon on September, 22-23rd 2017.

All information here

http://www.nsva.no/

Every 2 years, ISL Conference welcomes 1.000 doctors and therapy professionals from all over the world, to benefit from new research and innovate solutions to the many issues faced by health practitioners who treat people with lymphatic dysfunction.
New deadline for abstract submission : 31st March 2017

More information and registration here

he VASCERN 1st annual seminar will take place in Paris on October 13-14th! This event will gather 80 participants, including all our Members for the first time!

  @VASCERN 

Follow & tweet with us using #VASCERNdays2017

All our 31 Healthcare Providers Members will be represented by 1 or 2 representatives. 12 Patient Organisations, Members of our Patient Group (ePAG), will be represented as well.

Besides our Members, several VASCERN stakeholders (including the European Commission (ERN team, ERN IT team), ERN Board of Member States French representative, EURORDIS, FAIR Database, the European Joint Programme on Rare Diseases Research, ORPHANET, RD-Action) will be here.

On October 13th, it will be the first face-to-face gathering of all VASCERN Members since the official launch in Vilnius. This will be the opportunity to discuss:

• The structure and the functionning of the network since March, 2017;
• The state of play with regard to the implementation of our 1st year action plan (March 2017-February 2018);
• The patient involvement within VASCERN, in cooperation with EURORDIS;
• The achievements, challenges and opportunities for ERNs;
• The VASCERN Terms of Reference during the official VASCERN Board meeting.

On October 14th, the five VASCERN Rare Disease Working Groups will held parallel working sessions in the morning.

In the afternoon, the transversal WGs on eHealth-Training & Education and on Patient Registry will gather.

Programme available here

Stay tuned to get the latest news about our 1st Annual Seminar!

During our 1st VASCERN Annual Seminar, which took place in Paris on October 13-14, 2017, our 5 Rare Disease Working Groups have conducted parallel face to face 3.5 hours work sessions in the morning on the 14th.

These RDWG face to face meetings have been very productive and all the 5 RDWG have made a lot of progresses in the implementation of our action plan.

During our 1st VASCERN Annual Seminar, which took place in Paris on October 13-14, 2017, our Transversal Working Groups have conducted parallel face to face 2 hours work sessions in the afternoon on the 14th.

The eHealth & Training/Education WG, as well as the Patient Registy WG have met.

These face to face meetings have been very productive and both WGs have made a lot of progresses in the implementation of our action plan.

https://www.ashg.org/2017meeting/

The HHT-WG monthly virtual meeting takes place every 1st Friday of the month at 8 AM (GMT+1).

The HHT-WG will discuss patient pathways & complex clinical cases, among others!

VASCERN Patient Group (ePAG - European Patient Advocacy Group) virtual monthly meeting takes place every 1st Tuesday of every month at 10 AM (GMT +1).

VASCERN eHealth WG monthly virtual meeting takes place every 1st Tuesday of every month at 5 PM (GMT+1).

The eHealth & Training / Education WG works on:

• VASCERN-APP: A free Mobile Application for IOS and Android, which will enable patients & doctors to find and reach out easily all VASCERN Centers of expertise and Patient Organisations
• Pills of Knowledge: to develop education material available in several formats, including Videos (eLearning tools)
• Availability of conferences & videos on YouTube

The VASCERN MSA-WG monthly virtual meeting takes now place every 2nd Wednesday of every month at 5 PM (GMT +1).

The VASCERN MSA-WG will discuss:

• Patient pathways
• Patient passports
• Clinical trial
• Registry project
• Clinical case

The VASCERN VASCA-WG (Vascular Anomalies) monthly virtual meeting takes place every 2nd Monday of every month at 7 PM (GMT +1).

The VASCA-WG will discuss, among others:

• Patient pathway
• Registry
• Clinical trial
• Clinical case

Ahead of the Clinical Patient Management System (CPMS) launch, the European Commission organises a virtual meeting with the ERN Coordinators

The VASCERN PPL-WG (Pediatric and Primary Lymphedema) monthly virtual meeting takes place every 3rd Monday of every month at 5.30 PM (GMT +1).

The PPL-WG will discuss:

• Patient pathways
• Clinical guidelines
• Clinical case
• Clinical guidelines
• Registry

The VASCERN HTAD-WG (Heritable Thoracic Aortic Diseases) monthly virtual meeting takes place every 4th Monday of every month at 5 PM (GMT +1).

The HTAD-WG will discuss:

• Patient pathway
• Clinical guidelines
• Pills of Knowledge
• Registry
• Clinical case

Following the Paris face to face meeting during the 1st annual seminar, the VASCERN Registry WG meeting #4 will take place place virtually in November.

The VASCERN Registry WG will discuss:

• The EU common minimal dataset for Rare disease registration
• The FAIR principle, which was presented to all by Dr. Marco ROOS during our 1st Annual Seminar

RD-ACTION and DG Sante organise a workshop on "How can ERNs generate, appraise and use clinical practice guidelines, to enhance the impact and deployment of consensus guidelines in national health systems?"

The VASCERN Council meets every 4 months, or more depending on needs. This is the 3rd VASCERN Council meeting, following Vilnius (March) and virtual meeting last July.The Council is chaired by the Coordinator, Members are the Chairs of our Working Groups.

All information available here 

EURORDIS organises a ePAG face to face meeting in Paris. Paolo Federici, chair of our VASCERN ePAG group and ePAG representative for HHT will be there, together with Juergen Grunert, patient co-chair for the Medium Sized Arteries WG (vascular Ehlers Danlos), Christina Grabowski (ePAG representative for HHT) and Lise Murphy (ePAG representative for Heritable Thoracic Aortic Diseases).

VASCA WG submeeting on Orphanet classification

The VASCERN Paediatric and Primary Lymphoedema Working Group (PPL-WG) has organised a two day face-to-face meeting in Derby, U.K. that will take place from January 18th-19th, 2018.

On the first day, Prof Vaughan Keeley will give participants the chance to visit the Primary and Paediatric Lymphoedema Clinic at Royal Derby Hospital (Derby Teaching Hospitals NHS Foundation Trust). They will meet the clinic's multidisciplinary team as well as attend the Derby Lymphoedema Service Consultants Meeting in the afternoon. This will be a good opportunity for the PPL-WG to share best practices in patient care and to network.

The Outcome Measures for Treatment Meeting will be held on the second day, January 19th, 2018, where participants will discuss possible outcome measures for PPL in adults and children (e.g. limb volume measurements, cellulitis index, Quality of Life), the proposed frequency of these measurements, and other important considerations.

Prof Vaughan Keeley, Dr Sarah Thomis, Dr Nele DeVoodgt, Prof Isabelle Quere, Dr Ruth England, and Katie Riches will all be in attendance.

Consult the Agenda for Day 1 (January 18th, 2018): PPL WG Clinic Visit Agenda

Consult the Agenda for Day 2 (January 19th, 2018):  PPL WG Outcome Measures Meeting Agenda

The first meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on January 19^th, 2018 in Brussels, Belgium.

The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

The P101GM, dedicated to patients with Marfan syndrome, will aim to offer scientists a bioinformatics platform containing the genomic and phenotypic data of a starting cohort of 101 patients with Marfan syndrome, in the hopes of better understanding the variability and intensity of clinical manifestations seen in this disease. By using the most innovative technological tools currently available, it is hoped that researchers will be able to identify potential modifier genes (genes that affect the expression of one or more other genes) that may play a role in the severity of cardiovascular, skeletal and ocular manifestations seen in patients with Marfan syndrome, which could ultimately lead to the development of new therapeutic approaches.

The following participants will be present at this first meeting, organised by Ludivine Verboogen and Romain Alderweireldt: Prof Julie De Backer (Chair of the VASCERN HTAD WG), Prof. Anne De Paepe, Prof. Catherine Boileau (AP-HP, Bichat-Claude Bernard Hospital, Paris, France), Dr. Guillaume Smits, Prof. Bart Loeys (member of HTAD WG) and his collaborator Aline Verstraeten, Prof. Paul Coucke, Dr. Marjolijn Renard, Dr. Michel Verboogen, Me Bruno Fonteyn, Annemie T’Seyen and Julien Wolff.

To find out more information about this exciting new project, click here

The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA)'s Worskshop on the Preparation of Final ERN Specific Grant Agreement (SGA) Technical and Financial Reports will be held on Monday January 22nd, 2018 in Luxembourg.

VASCA WG submeeting on Orphanet classification

The VASCA WG will have their second meeting on the Orphanet classification of Rare Vascular Anomalies.

The 18th UIP World Congress of Phlebology will take place in Melbourne, Australia from February 4-8, 2018. It is the largest international gathering of the phlebology community. Phlebology is a multi-disciplinary field studying disorders of venous origin. Three VASCERN members are keynote invited speakers at this event: Prof Miikka Vikkula (Chair of our VASCA-WG), Prof Laurence Boon (VASCA-WG) and Prof Vaughan Keeley (PPL-WG).

To register or find more information on this event click here!

The European Joint Programme (EJP) Cofund on Rare Diseases will have its second meeting on the 5-6 of February, 2018 in Paris, France to work on the writing of the application for this instrument that aims to support coordinated national research and innovation programmes. Professor Claire Shovlin (Chair of the HHT-WG) will be in attendance for VASCERN at this event.

The Joint Research Centre of The European Commission will host a training workshop on Rare Disease Registries from February 8-9th, 2018 in Baveno, Italy.

Prof Leo Schultze Kool (Patient Registry WG Chair) and Dr. Alessia Paglialonga will be attending for VASCERN.

The 3rd International Congress organized by UNSED, French National Union of Ehlers-Danlos syndromes, will take place in Paris, France on February 9th, 2018. Prof Xavier Jeunemaitre (MSA-WG Co-Chair) will be one of the speakers at this event, where he will give a presentation on the latest news in vascular EDS.

More information here

The 26th EURORDIS Round Table of Companies Workshop, entitled "Rare disease therapies: do you get what you incentivise?" will take place on February 21st, 2018 in Brussels, Belgium.

This workshop will bring together stakeholders interested rare diseases and orphan drug development to discuss the role of incentives in rare disease therapies development,  the shortcomings of the current system and the strategies that the rare disease community can use to fulfill important unmet medical needs.

See the preliminary Programme here

For more information, click here

The European Joint Programme on Rare Diseases is currently under elaboration. European Reference Networks are partners of this future new European programm.e for Rare Diseases research. Professor Claire Shovlin and Marine Hurard will be attending for VASCERN at this event.

The International Symposium entitled "Revisiting Fibromuscular Dysplasia and Related Vascular Diseases" will take place in Brussels, Belgium from February 22-24, 2018.

This exciting event will unite the top experts in Fibromuscular Dysplasia (FMD) including the meeting's Co-President, Prof Alexandre Persu, who is an expert in FMD and in charge of the Hypertension Clinic at the Université Catholique de Louvain (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels), a centre we hope to include in the upcoming expansion of the VASCERN network.

VASCERN members Prof Bart Loeys, Prof Xavier Jeunemaitre and Prof Miikka Vikkula will also be in attendance!

To register click here

Full programme here

Additional information here

Rare Disease Day 2018 will take place on February 28th, 2018! This yearly International event aims to to raise awareness for Rare Diseases with the general public and policy-makers and everyone is encouraged to take part!

There will be numerous events all around the world, including a Rare Disease Day 2018 event in Paris, France organised by the French Rare Disease Networks. The "Rare Disease Village" will take place in Paris under the canopy of the Forum des Halles. Visitors will be able to participate in a wide variety of interactive activities including a central area dedicated to adaptive sports, rare disease quizzes with prizes, a photobooth and various workshops on different themes such as "Dare Diseases and Nutrition" and "Introduction to Rare Disease Research". This event aims to reach out to the general public in order to raise awareness for rare diseases.

VASCERN will equally be in attendance at this event in order to inform the public about VASCERN and the European Reference Networks (ERNs) in general. We look forward to seeing you  there!

Link to the event here

For a list of events near you click here

All information at https://www.rarediseaseday.org/

The official 2018 Rare Disease Day video is now available (in 24 languages)! Find it here

The 4th ERN Coordinators Group Meeting will take place on March 5th, 2018 in Brussels, Belgium.

The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Bologna, Itlay from July 7-10, 2018.

All information about the RE(ACT) CONGRESS & registration available here.

For a limited time, a special registration rate for the RE(ACT) Congress 2018 is available. The special price is 250 Euros (only payable by credit card and not applicable to private companies). To benefit of the special rate, please register on the registration page and insert the promotional code “HAPPYCRAZYRATE” at the end of the form.

The VASCERN Council meets every 4 months, or more depending on needs. This is the 4th VASCERN Council meeting. The Council is chaired by the Coordinator and Members are the Chairs of our Working Groups.

The Joint Research Centre (JRC) of The European Commission will hold its second training workshop on the European RD Registry Infrastructure (ERDRI) Tools on March 8-9th in Milan Italy. This session will deal specifically with the Pseudonymisation Tool and the Search Broker.

VASCERN will be represented at this event by Prof Leo Schultze Kool, Chair of the Patient Registry WG, along with Dr Susan Marelli and Dr Raffaella Gaetano.

The VASCERN Patient Registry WG meeting #5 will take place place virtually on March 8, 2018 at 6pm.

All information on this conference here

More information at www.research4rare.de 

Announcement

The third cardiogenetics training course supported by the European Society of Human Genetics will take place in Manchester, UK (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp) from Saturday April 21st to Tuesday April 24th 2018.

The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders. Speakers at this event include Prof Bart Loeys (VASCERN HTAD and MSA WG member) and Prof Xavier Jeunemaitre (VASCERN MSA-WG Co-Chair).

For course program, all practical information and to register for the course please go via the ESHG website here

Ten ESHG scholarschips (covering registration and accommodation) are available for young cardiologists/ clinical geneticists in training from European Countries. Preference will be given to students from countries which are disadvantaged economically. To apply for a scholarship please send after registration a motivation letter to anne.m.burns@manchester.ac.uk.

The 2nd Vascular Ehlers Danlos Syndrome (vEDS)Scientific Meeting will take place May 2, 2018 in Amsterdam, the Netherlands. This meeting will bring together some of the brightest minds within the international vEDS community to discuss current needs and concerns, as well as recent advances in their research.

Several VASCERN MSA-WG members will be present at this event including Dr. Leema Robert (Chair), Prof Xavier Jeunemaître (Co-Chair), Prof Julie De Backer and Dr. Michael Frank.

More information here

The 10^th International Research Symposium on Marfan Syndrome (MFS) and Related Disorders (RD) will take place from the 3rd-5th of May, 2018 in Amsterdam, The Netherlands.

This symposium brings together the world’s leading experts (including members from the VASCERN HTAD WG) to discuss the most recent and innovative research on MFS and RD. A wide variety of topics will be discussed including sessions on  "Genetic and Environmental Modifiers of MFS and RD Phenotypic Variability" to "Medical and Holistic Treatment Options for Pain in MFS".

Early bird registration ends on February 1st, 2018! To register for this event, click here

Find the schedule for the event here

For further information, click here

The Marfan Foundation’s First International Patient Symposium on Marfan Syndrome and Related Disorders will be held on May 6th, 2018 in Amsterdam, The Netherlands.

This event will feature leading medical speakers from several countries, including the US, and will offer both education and support programs that were created to increase a patient's understanding of Marfan and related disorders, answer any questions about diagnosis and treatment, and improve the quality of life of patients with these diseases.

Topics pertaining to adults, teens, and children with Marfan and related disorders will be covered. The program also includes a Creating Connections Luncheon where patients can spend time networking with people in their area who also have Marfan or a related disorder.

After the main program there will be time for a meet and greet with the doctors and fellow patients from across Europe.

To register for this event click here

For more information on this event click here

ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.

All information & registration available here

Deadline to register: 27 April 2018
Early-bird cut off date: 15 March 2018

Programme

The VASCERN MSA WG will hold a face-to-face meeting on May 23rd, 2018 in the framework of the Pan London aortopathy meeting at Guy's Hospital in
London, UK. Further details TBA.

The Pan-London Aortopathy meeting with Focus on Pregnancy will take place in London on the afternoon of May 23rd, 2018. This meeting will follow the MSA-WG face-to-face meeting in the morning.

Dr. Leema Robert and Dr. Yaso Emmanuel (Chair and member of the MSA-WG) will give a presentation entitled "Introduction to the European Reference Network (ERN) for Rare Vascular diseases" and a discussion period will allow participants to give their feedback on what topics they think should be covered by the soon to be created 'pills of knowledge' by the MSA-WG.

Read the full programme here

Our VASCA-WG will assemble for a face-to-face meeting on Monday May 28th in Amsterdam, The Netherlands.

This meeting will be held before the ISSVA 22nd International Workshop, that runs from May 30th-June 1st, 2018. More details here.

The VASCERN HHT-WG will have a face-to-face meeting in London, UK on May 29th, 2018. Further details on this meeting TBA.

The VASCERN HTAD-WG will hold a face-to-face meeting in Brussels, Belgium on May 29th, 2018. Further details on this meeting TBA.

An RD-Action workshop, co-organised with the European Medicines Agency (EMA) and with DG Sante, will take place in London from May 29th-30th, 2018.

This event hopes to showcase the ERNs to the EMA, to explore how ERNs can add value to clinical trials/studies, and to define some concrete steps towards a more strategic engagement with the EMA, in particular, in future.

Prof Claire Shovlin (Chair of our HHT-WG) will represent VASCERN at this event.

More information TBA.

The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended by specialists from expert centres all around the world.

All of the HCP members of the VASCA WG will be represented and a large number of them will equally be speaking at the event or presenting posters. Our VASCA-WG will use this opportunity to assemble for a face-to-face meeting on Monday May 28th.

This year, for the first time, patient organisations will be actively involved and there will be a Patient Organisations meeting that will take place on the afternoon of Tuesday May 29^th, 2018.

This biannual meeting, which is attended by a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, presents the latest developments in this fast moving area.

Watch the promotional video here

Early bird registration deadline: 16 March 2018

Discounted registration deadline: 1 May 2018

All information and registration on the event page here

The 8th International Lymphoedema Framework (ILF) Conference will take place from the 6^th-9^th of June, 2018 in Rotterdam, the Netherlands. This conference, hosted by the ILF and the Dutch Lymphoedema Framework (NLNet) will be a great opportunity for healthcare professionals, researchers, patients, and industry to discuss the latest advances in the treatment and care of lymphoedema and to raise awareness in order to make it a priority on all national health agendas.

There will also be a Children's Day on June 9th, where children can participate in a variety of workshops all centered around the theme ‘Children and edema: a dynamic duo’.

Register here

For more information, click here!

The second meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on June 8, 2018 in Brussels, Belgium.

The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

The EURORDIS summer school is taking place in Barcelona from the 11 - 15 June 2018. This year, the summer school will focus on educating patients and researchers on the regulatory process of orphan medicinal products in Europe in order to strengthen their advocacy skills. The last day to register for the English edition is November 30^th, 2017 and the last day to register for the Spanish edition is December 15^th, 2017.

All information here

The latest advances in human genetics will be explored at the the 51st European Human Genetics Conference in Milan, Italy from June 16-19, 2018. Participants from all over the world will be in attendance and VASCERN members, Prof Laurence Boon (VASCA WG) and Prof Miikka Vikkula (Chair of VASCA WG) will be speakers at this exciting event with presentations entitled "Etiology of vascular malformations: A question of place and timing" and "Clinical management of vascular malformations"

Deadline to submit an abstract: Friday, March 9, 2018

Early bird deadline: Friday, April 6, 2018

Link to programme here

For further information visit the event website here

The Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place on June 22, 2018 in Paris, France. Prof Guillaume Jondeau (Coordinator of both FAVA-Multi and VASCERN) will be at this event.

Marine Hurard, VASCERN Project Manager, will present VASCERN's actions to date.

The program of the event, in French, can be found here

The 5th meeting of the ERN Coordinators Group (ERN-CG) will take place on June 25th, 2018 in Brussels, Belgium.

It will be preceeded by the internal coordinator's meeting.

The representatives of the Ministry of Health will meet at the ERN Board of Member States meeting.

The International Conference on Vascular Anomalies organized by La Società Italiana per lo Studio delle Anomalie Vascolari (SISAV) will take place from June 28-29, 2018 in Rome, Italy.

Members of the VASCA-WG will be giving presentations at this event, including Prof Miikka Vikkula (Chair), Prof Laurence Boon, Dr May El Hachem, and Dr Andrea Diociaiuti.

Link to the program here

The International Congress on Advanced Treatments in Rare Diseases (RARE2018) will take place from July 2-3, 2018 in London, UK. This congress will address the challenges of developing rare disease treatments as well present the latest in rare disease therapies.

Early bird registration, until March 14, 2018,  here

For full programme, click here

For further information click here

The 5th VASCERN Council Meeting will take place on July 4th, 2018 at 6PM.

The 6^th radiz Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 11^th to July 13^th 2018. It is organised by radiz, a clinical research priority program of the University of Zurich with collaborations between the Children's Hospital Zurich, the University of Zurich, and the UniversityHospital Zurich.

Lectures by national and international rare disease experts, workshops and poster presentations by participants will all take place during this 3 day event!

Application deadline: April 9^th 2018.

See preliminary programme here

For more information click here

The European Society of Cardiology (ESC) Congress 2018, the world's largest cardiovascular congress, will take place from August 25-29th, 2018 in Munich, Germany.

Many VASCERN members will be attendance at this international event, including Prof Julie De Backer (Chair of HTAD-WG), Prof Guillaume Jondeau (Co-Chair of HTAD-WG), Prof Yskert von Kodolitsch (HTAD-WG) and Prof Jolien Roos-Hesselink (HTAD-WG).

For more information and for the full programme, click here

Early Registration Deadline: May 31, 2018.

Register for this event here

The 7th Nordic Congress of Lymphology will take place in Helsinki, Finland, from September 6-9, 2018.

Members from both the VASCA-WG (including Chair, Prof Miikka Vikkula) and PPL-WG (including Chair Prof Robert Damstra, Dr Michael Oberlin, Prof Sinikka Suominen, and Dr Kristiana Gordon) will be giving presentations at this event!

To register for this event click here

For more information click here

The 6th International Summer School Rare Disease & Orphan Drug Registries, including a “Bring Your Own Data – BYOD” to Link Rare Disease Registries session, will take place from September 10-14, 2018, at the Istituto Superiore di Sanità in Rome, Italy.

The International Summer school intends: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations, with particular attention to governance, quality, sustainability and legal issues; ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks (ERNs) and National Plans in the EU.
The School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.

The first part (September 10-12, 2018) will provide participants with useful tools and methodologies to plan, establish and manage the registry activities.

The second part (September 13-14, 2018) will be a hands-on experience (Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.

The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations involved in or intend to establish a rare disease registry, including inside European Reference Networks.

Prof Guillaume Jondeau, VASCERN Coordinator, will represent VASCERN at the first part of this event.

Register before May 30th, 2018 via the online registration form here

The provisional agenda for the event can be found here

For more information click here

The 6th edition of the International Meeting on Aortic Diseases will be held from September 12-14, 2018 in Liège, Belgium.

"The main goal of The International Meeting on Aortic Diseases (IMAD) is to gather all cardiovascular clinicians and scientists to share their experiences on basic research, genetic aspects of aortic aneurysms, aortic dissections, aortitis, aortic graft infection and their treatment as well as on the new pathophysiological concepts in bicuspid aortic valve, TAVI indications and surgical treatment of aortic valve diseases and also, to provide information about the latest innovations in spinal cord protection."

Speakers at this event include Prof Julie De Backer (our HTAD WG Chair and MSA WG member) and Prof Bart Loeys (member of the HTAD and MSA WGs).

Register for this exciting event here

For the full program and all other information click here

Aortic Disease Awareness Day is an international day of events that aim to raise awareness for aortic diseases and aortic dissection!

For more information and to find events near you, click here

The International Conferences on Rare Diseases and Orphan Drugs (ICORD) will hold its 13th Annual Meeting from the 20-21 September 2018 in Stockholm, Sweden.

"One aim of ICORD 2018 is to review needs that have been fulfilled and, in particular, to highlight important remaining unmet needs for patients with Rare Diseases in a global perspective."

To Register for this event click here: https://icord2018.eventsmart.com/events/icord-2018/

For more information click here: http://icord.se/upcoming-events/icord-2018-stockholm

The International Symposium of the Ehlers-Danlos Syndromes will take place in Ghent, Belgium, from the 26-29 of September 2018.

Members of our Medium-Sized Artery Working Group (MSA-WG), including Dr. Leema Robert (Chair of MSA-WG), Prof Xavier Jeunemaitre (Co-Chair of MSA-WG) and Prof Julie De Backer, will be in attendance.

Dr Leema Robert will present VASCERN and the new VASCERN mobile App during her presentation: Development of a multipurpose mobile app for patients with EDS.

For more information, including the full program, click here

To register for this event, click here

The National Center for Rare Diseases is organising a two-day course entitled Clinical Practice Guidelines for Rare Diseases : development and quality assessment. 

The course intends to promote guideline quality standards in rare diseases and to support the European Reference Networks in the development of their capacity
to produce and assess clinical practice guidelines.

Further information here

VASCERN Days 2018 (2-day annual seminar) will take place on October 11-12, 2018 in Paris, France.

This event is only open to members of VASCERN (both HCPs & ePAGs) as well as several invited guests from institutions such as the European Commission, OpenAPP, EURORDIS, and the French Ministry of Health. In total, more than 100 participants, from all across Europe, are expected!

To read the full programme click here

For more information on this event click here

The DIGGFA society (Deutschen interdisziplinären Gesellschaft für Gefäßanomalien or, in English, the German Interdisciplinary Society for Vascular Anomalies), will hold its annual meeting on October 26-27, 2018.

Prof. Jochen Rössler (from VASCERN's VASCA-WG) will give a presentation at this event.

Read the programme (in German) here

The first Central-Eastern European Marfan Symposium, organised by our HCP Member, Prof. Zoltán Szabolcs, MD; and Dr Kálmán Benke, MD, PhD; Heart and Vascular Center, Semmelweis University, Budapest, will take place on October 26th, 2018 in Budapest, Hungary.

Prof Guillaume Jondeau, VASCERN Coordinator, will present VASCERN and the HTAD-WG at this event.

Prof Julie De Backer, VASCERN HTAD-WG Chair, will be also in attendance and present:

(8) Marfan cardiomyopathy
Prof. Julie De Backer, MD; Centrum Medische Genetica, Gent

Prof. Jolien Roos-Hesselink, from our HCP Member Erasmus MC, Rotterdam, HTAD-WG Member, will also be presenting:

To see theprogram, click here

All information and registration here

Europe’s largest Orphan Drug Congress will be back for an 8th session from November 6-8, 2018 in Barcelona Spain. This congress allows the rare disease community a chance to discover the latest developments and technologies in the orphan drugs industry.

All information and registration on the event page here

The HHT Europe Annual Meeting will take place from November 16-17, 2018 in Oslo, Norway.

This meeting will reunite the community of HHT Patient Organisations with 35 delegates from 12 EU organizations present, along with the participation of Marianne Clancy from Cure HHT (via videoconference). This includes many of VASCERN's ePAG advocates for HHT.

The aim of the annual meeting will be to share best practices, capacity building, and to increase know how and knowledge.

The 6th ERN Coordinators Group (ERN-CG) Meeting will take place on November 20th, 2018 in Brussels, Belgium.

The 4th Conference of the European Reference Networks (ERNs) entitled "ERNs in action" will take place in Brussels, Belgium from November 21-22, 2018. The objectives of this year's conference will be to:

• Mark that ERNs are entering the next stage of their lifecycle: the deployment phase.
• Present the main clinical and organisational outcomes and success stories of the networks and consider the lessons learned.
• Identify the main challenges, potential improvements and opportunities for the functioning and management of the networks and the way forward for the future of the ERN system

VASCERN members who will be at this event include: our Coordinator, Prof. Guillaume Jondeau (who will Co-lead parallel session 6), Prof. Leo Schultze Kool (VASCERN Registry WG Chair and VASCERN VASCA-WG Co-Chair), Prof. Claire Shovlin (VASCERN HHT-WG Chair), Prof. Julie De Backer (VASCERN HTAD-WG Chair), Dr Leema Robert (VASCERN MSA-WG Chair), Prof. Robert Damstra (VASCERN PPL-WG Chair, parallel session 6 speaker), Prof. Miikka Vikkula (VASCERN VASCA-WG Chair), Dr Alessandro Pini (eHealth & Training / Education WG Chair), Romain Alderweireldt (VASCERN Ethical and Legal WG Chair (interERN WG)), Juergen Grunert (VASCERN ePAG Chair) and Natascha Assies (VASCERN ePAG co-chair for PPL and parallel session 6 speaker).

VASCERN Coordination team members Marine Hurard (Project Manager) and Natasha Barr (Project Officer) will equally be in attendance.

Prof Guillaume Jondeau will co-lead the parallel session 6 entitled Patient's representatives and Healthcare providers partnerships where Prof Robert Damstra and Natascha Assies will present An Overview of Pediatric and Primary Lymphedema, the Pill of Knowledge (PoK) that that the PPL-WG thanks to the close cooperation between patient advocates and healthcare professionals.

Read the full programme here

Find all additional information related to the conference on the European Commision's event page here.

A link to the webstreaming of the conference will also be provided on the event page so that everyone can follow along!

The H2020-PCN-Santé is organizing a webinar on December 10, 2018 (at 10 AM) to provide information on the European Joint Programme on Rare Diseases (EJP-RD) and its future calls for projects that will begin in 2019.

The webinar will be in French.

To register (participant number is limited) click here

For more information, click here

The H2020-PCN-Santé with the ANR (French Research Agency) will organise a Webinar on December 14, 2018 at 2PM on the different ERA-NET cofund actions for Health and their upcomong calls.

Webinar will be in French.

For more information, click here

To register (limited space available) click here

The 22nd Congress on Immune Pathology and Orphan Diseases will take place in Turin, Italy from January 24-26, 2019. Professor Guillaume Jondeau, VASCERN Coordinator, will give a presentation of VASCERN at this event.

To read the full program (in Italian) click here

The FEDER (The Spanish Rare Diseases Organisation) meeting on European Reference Networks entitled "ERNs: an integral challenge", will take place on Wednesday January 30th, 2019 in Madrid, Spain. Two VASCERN ePAG members will be speakers at this event: Ms. Elena de Moya (for HTAD) and Dr. Luisa Botella (for HHT).

Ines Hernando, ERN and Healthcare Director from Eurordis will also be in attendance.

To learn more about this event, click here

To read the full program (in Spanish) click here

The 8th edition of the EURORDIS Black Pearl Awards will take place on February 12th, 2019 at Le Plaza Hotel Brussels.

The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day. Since 2012, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policy makers, scientists, companies and media who strive to make a difference for the rare disease community.

Programme:

18.30 – 20.45 Welcome Address & Seated Dinner

20.45 – 22.30 Awards Ceremony

22.30 – 23.00 After dinner networking

Prof. Guillaume Jondeau, coordinator of VASCERN, will attend this event as a member of the Black Pearl Committee.

For more information : click here 

Exctract from the presentation of the sympoisum :

EURORDIS-Rare Diseases Europe is organising the 3rd Multi-Stakeholder Symposium in February 2019 to build on the outcomes of the previous multi-stakeholder Symposia held in 2016 and 2017.
We will use the collaborative multi-stakeholder approach in the position paper ‘Breaking the Access Deadlock to Leave No-one Behind’ written in January 2018 to develop and garner broad endorsement for a ‘roadmap’ document detailing a joint vision, offering solutions and stating commitments by all players in the rare disease community aimed at accelerating the development of effective therapies and guaranteeing timely and universal access to them, thereby progressively reducing existing gaps and inequalities.
The timing of this initiative is of the upmost importance as the European Parliament elections will take place in May 2019 and the related changes in the European institutions, in particular at the European Commission, will subsequently take place. The ongoing discussion around the establishment of the Multiannual Financial Framework for the period 2021 – 2027 provides additional opportunities.
Thus, it is essential for the rare disease community to have a clear and shared ‘roadmap’ that both highlights the critical need for a European vision and offers practical solutions that are implementable by the current and future European parliamentarians by 2025.

For more information on this symposium : click here

To see the full programme : click here 

The ERN Research WG will have a videoconference meeting on February 15th, 2019.

Prof. Miikka Vikkula, chair of the VASCA WG  or Prof. Claire Shovlin, chair of the HHT WG  will represent VASCERN in this interERN group.

The ERN WG on Knowledge Generation/Working subgroup on Training and Education will hold a face-to-face workshop on February 18th, 2019, in Brussels, Belgium. VASCERN will be represented at this event by Raffaella Gaetano (Centro Malattie Rare Cardilogiche – Marfan Clinic Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco, Milan, Italy).

The Rare Disease Day Policy Event at the United Nations will take place on February 21, 2019 at the United Nations headquarters in New York.

The event aims to present a number of activities carried out through 2017 and 2018 within the human rights, health and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases. It will take the form of an all-day conference bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority.

For more information on this event, click here

The Pediatric and Primary lymphedema Working Group (PPL-WG) will have its face-to-face meeting in Leuven, Belgium from February 21-22nd, 2018.

This two-day meeting will be organised and hosted by Dr. Sarah Thomis, HCP Representative from the University Hospitals Leuven.

It will be the PPL-WG's second face-to-face meeting, after VASCERN Days 2018, for this second year of activity.

For a reminder, the other 4 Rare Disease Working Groups (HHT, HTAD, MSA and VASCA) all held their individual face-to-face meetings in May of this year.

Romain Alderweireldt (VASCERN Ethical and Legal WG Chair and member of  Heritable Thoracic Aortic Diseases working-group) will be representing VASCERN as Ethics WG Chair.

Rare Disease Day 2019 will take place on February 28th, 2019!

The theme for this year's event will be Bridging health and social care. Read all about the importance of this theme to the rare disease community here

Rare Disease Day takes place on the last day of February each year and aims to raise awareness for rare diseases amongst the general public, healthcare professionals and decision-makers in order to address the needs of those living with rare diseases.

The VASCERN Coordination team will attend an event in Paris organised by The French Reference Networks on Rare Diseases along with the French network for rare vascular diseases (FAVA-Multi)

The 2nd International Congress on Advanced Treatments in Rare Diseases (RARE2019) will be held in Vienna, Austria from March 4-5th, 2019. This congress will address the challenges of Rare Diseases Treatments as well as the new therapies in development.

To see the prelimanary program click here

For all further information click here

Marine Hurard will be representing VASCERN for this meeting as VASCERN Project Manager.

VASCERN's Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) will have a face-to-face meeting in London, UK on March 8th, 2019.

This meeting is organized in London and hosted by Claire Shovlin ( Chair of HHT working-group meeting ) in Hammersmith Hospital, Imperial College Healthcare NHS Trust.

The next face-to-face training of the EURORDIS Winter School will take place 11-15 March 2019 at the Imagine Institute in Paris, France.

For more information, click here

VASCERN eHealth WG monthly virtual meeting
The 1st Tuesday of every month, from Tuesday, October 3, 2017, to no end date

North American Vascular Biology Organization (NAVBO) is highlighting HHT research in its webinar series with Stryder Meadows, Ph.D., Assistant Professor, Stepping Stone Foundation Early Career Professor in the Department of Cell and Molecular Biology at Tulane University presenting “Angiopoietin-2 inhibition rescues arteriovenous malformation in a SMAD4 HHT mouse model”.

Dr. Meadows’ presentation will be related to 2 papers:

1. Vascular Deficiency of Smad4 Causes Arteriovenous Malformations: a Mouse Model of Hereditary Hemorrhagic Telangiectasia. Angiogenesis, 2018 – https://www.ncbi.nlm.nih.gov/pubmed/29460088
2. Angiopoietin-2 Inhibition Rescues Arteriovenous Malformation in a Smad4 Hereditary Hemorrhagic Telangiectasia Mouse Model. Circulation, accepted Jan 11, 2019

For more informations, click here

The ERN Research WG will their monthly videoconference meeting on March 15th, 2019.

Prof. Miikka Vikkula, chair of the VASCA WG  or Prof. Claire Shovlin, chair of the HHT WG, will represent VASCERN in this interERN group.

The 7th ERN Coordinators Group Meeting will take place in Brussels, Belgium on March 25th, 2019. VASCERN Coordinator, Professor Guillaume Jondeau and VASCERN Project manager, Marine Hurard, will be in attendance at this event.

The Fifth meeting of the European Reference Networks IT Advisory Group will take place on April 2nd, 2019 in Brussels, Belgium. Prof. Guillaume Jondeau and Ibrahim Donmez will be present at this event.

The fourth cardiogenetics training course supported by the European Society of Human Genetics will take place from Saturday April 27^th to Tuesday April 30^th 2019.

The course venue alternates between Manchester and Antwerp and this year the course is organized again in Antwerp (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp)

The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders.

Prof. Bart Loeys, member of  the VASCERN HTAD-WG will give several presentations at this event, including one on aortopathies.

For the course program, all other practical information and to register for the course please visit the training course website: http://ngs.uantwerpen.be/cargen2019/

The International Consortium for Health Outcomes Measurement (ICHOM) Conference 2019 will take place from May 2-3rd, 2019 in Rotterdam, The Netherlands.

The conference will feature keynotes and discussion panels, as well as three breakout tracks (Clinical Care, Data and Innovation, and Strategy), comprising of three sessions each.

For more information: click here 

The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Toronto, Canada from May 8-11, 2019.

All information can be found here

VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will have a face-to-face meeting in Amsterdam, The Netherlands on May, 14th, 2019.

Marine Hurard, Project Manger will represent VASCERN at this online meeting.

The Hospital Managers’ meeting will take place on 16 - 17 May 2019 in Hospital Saint-Louis, Paris, France. Professor Guillaume Jondeau, ERN Coordinator, will attend this meeting.

Here is the final agenda :

Thursday, 16 May 2019
13:00 Welcome and opening
13:15 – 13:45 Introduction: What benefits can a hospital managers expect from ERNs?
13:45 – 14:45 1st Plenary session: Funding schemes and diagnostic related groups (DRGs) systems: feasibility
in low prevalence conditions
14:45 – 15:45 2nd Plenary session : The hospital of the future
15:45 – 16:15 Pause
16:15 - 18:30: Workshops: sharing best practices to help ERN
17:30-18:30 3rd Plenary session: Presentation of the workshop + discussion
19:00 End of the day: visit of the “Musée des Moulages” and networking dinner at the Musée des moulages

Friday, 17 May 2019
09:00 – 09:30 Welcome and opening
10:00 – 12:30 4th Plenary session: ‘The ERNs environment and actors: Dialogue with the ERN managers’
12:30 – 14:00 Lunch
14:00 – 16:00 : 5th Plenary session: ‘Lessons taken and next steps’
16:00 End of the day

The next full EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Details on how to register will be made available on this page shortly.

EURORDIS is offering patient fellowships for up to 40 patient advocates to attend the EURORDIS Membership Meeting 2019 Bucharest.

These fellowships aim to empower patient advocates by offering a platform for networking opportunities, access to information and sharing experiences. The programme covers:

• Registration (fee waiver)
• Travel (return trip economy fare flight or train)
• Accommodation

The total of the travel and hotel expenses reimbursed by EURORDIS cannot exceed 400€ per fellow.

To apply for a fellowship

Patient representatives wishing to benefit from this fellowship programme are invited to fill out and return the Patient Fellowship Programme Application Form.

Deadline: 28 February 2019

Selection of fellowship beneficiaries

Fellows will be selected based on their advocacy skills and objectives, by an ad-hoc committee and notified by 15 March 2019.

The selection criteria are defined in the Patient fellowship Evaluation Scale.

For more information, please contact: anja.helm@eurordis.org

For more informations about this event, click here

VASCERN's  Vascular Anomalies Working Group (VASCA-WG) will hold a face-to-face meeting from May 27-28th, 2019 in Brussels, Belgium.

This meeting is organized in Brussels ( Cliniques universitaires Saint Luc.) and hosted by Miikka Vikkula ( Chair of VASCA working-group).

The French network on rare multisystemic vascular diseases (FAVA-Multi) will hold their annual meeting on June 7th, 2019 in Paris, France.

Marine Hurard, VASCERN Project Manager, will give an update on the European Reference Networks (and VASCERN in particular) and Prof. Guillaume Jondeau, VASCERN coordinator, will give an update on the Clinical Patient Management System (CPMS).

The VASCERN coordination team as well as other French VASCERN HCP and ePAG representatives will also be in attendance at this event.

To consult the agenda of this event (in French), click here!

 Registration is now open for the 13th Annual International Scientific Conference!

 This June 12 - 16, in San Juan, Puerto Rico for invited speakers, cross-disciplinary sessions, abstract poster viewings, and more! Early Bird pricing is now live through April 30. Register here

This biennial meeting is a must-attend for both established and early-stage researchers, clinicians experienced in treating HHT, those entering the field, and patients interested in learning more on the medical side.

The 9th International Conference of the International Lymphoedema Framework (ILF) will take place from June 13-15th, 2019 in Chicago, USA.

VASCERN PPL-WG member, Dr Kristiana Gordon, is already a confirmed to speak at this event.

For more information, click here

The European Human Genetics Conference hosted by The European Society of Human Genetics (ESHG) will take place from June 15-18, 2019 in Gothenburg, Sweden.

Prof Bart Loeys, member of the HTAD-WG and MSA-WG, is a confirmed speaker at this event.

To see the list of speakers : click here 

For the programme of the event : click here 

For more information click here 

The 8th meeting of the European Reference Networks Coordinators Group (ERN-CG) will take place in Brussels Belgium on the 24^th of  June 2019.

Both VASCERN's coordinator, Prof. Guillaume Jondeau, and Project Manager, Marine Hurard, will be in attendance.

One representative per ERN will participate in the focus group meeting of WP17 of EJP-RD. The meeting will take place on 26 June in Leiden

The objective of this focus group meeting will be to develop the ERN research training program based on the EJP-RD ERN survey results

The meeting participants will discuss details for the two main schemes – training workshops/seminars and fellow exchanges - that the ERN research training program will be made of. Topics to be discussed include topic prioritisation, participants/fellow selection and assessment.

Here is the agenda:

1.- Update on the Taxonomy study
2.- Update on the actions included in Health Programme ( Clinical guidelines, short stays of professionals)
3.- State of play on training and education: new action 2020

The MSA-WG face-to-face meeting will take place on July 1, 2019 in London, UK. It will be hosted by Dr. Leema Robert, Chair of the MSA-WG.

When is it? Thursday, 4th July, 2PM CET

Where is it? Join in from your laptop/desktop

Who’s doing it? Presented by Con Hennessy, CEO, OpenApp

Why should I be there? To get a better understanding of what an ERN population registry might look like.

What’s it all about? An introduction to a JRC compatible ERN registry, how to collect data from multiple data sources, and how to engage patients and clinicians/HCPs. Full details below.

To register and have more information, click here 

The 7th Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 10^th to July 12^th 2019.  This summer school (aimed mainly for clinicians, physician-scientists, postdocs, and PhD students) is organised by radiz - Rare Disease Initiative Zürich of the University of Zurich.

A wide variety of subjects in the arena of rare diseases will be covered. There will be lectures given by national and international rare disease experts, workshops and poster presentations by participants. Subjects include drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases.

Up to 30 participants will be admitted, so space is limited. Participants are expected to bring a poster about their work or research interests related to rare diseases.

Find the full programme here.

For all further information, including the application procedure, click here.

Application deadline is April 2^nd 2019.

For more informations click here or here.

25-27 Aug 2019

Krakow, Poland

ICE Kraków Congress Centre

Registration free until 01.08.2019

The 2019 European Society of Cardiology (ESC) Congress will take place from the 31 August - 04 September 2019, in Paris, France.

This events brings the world of cardiology together :

• 32,000 healthcare professionals
• From 150 countries
• 4,500 abstracts presented
• 500 experts sessions
• 400 cardiology topics
• 200 exhibiting companies
• 5 days of scientific sessions

VASCERN members, both from the HTAD and MSA working groups will be in attendance at this event.

Many VASCERN members will also be giving presentations, including HTAD-WG Chair Prof Julie De Backer, HTAD-WG Co-Chair Prof. Guillaume Jondeau and MSA-WG Co-Chair Dr. Michael Frank. The presentations will be available on the ESC website with the creation of an ESC account (which is free).

To sign-up for an ESC account and access the presentations click here. You can then search by topic or by speaker for all the presentations!

More informations : click here 

VASCERN Monthly ePAG monthly meeting

VASCERN HTAD clinical outcome measures

The Pediatric and Primary Lymphedema WG (PPL WG) face-to-face meeting will take place on September 12-13th, 2019 at St Georges Hospital in London.

It will be led by PPL-WG Chair, Dr. Robert Damstra, and PPL-WG Co-chair, Prof Sahar Mansour. The first day will include presentations by ePAG Co-Chair and Deputy Co-Chair for PPL, Pernille Henriksen and Manuela Marques, as well as discussions on the various work packages that the group have underway. The second day will focus on patient case discussions amongst the healthcare professionals of the group.

Members of PPL-WG will equally attend a dinner on the evening of September 12.

Genetic Alliance UK will hold a ERN UK conference on September 17th, 2019 in London, UK.

VASCERN members Prof. Claire Shovlin (HHT-WG Chair; Hammersmith Hospital, Imperial College Healthcare) and Dr. Leema Robert (MSA-WG Chair; Guy’s Hospital), who represent two of our 4 British Healthcare Providers (HCPs), will be in attendance. The other two HCPs are represented by Prof. Vaughan Keeley (PPL-WG member; Derby Teaching Hospitals NHSF Trust) and Prof. Sahar Mansour (PPL-WG Co-Chair;  St George’s University Hospitals).

The EJP RD General Assembly will take place from September 17-19, 2019 in Gdansk, Poland.

Professor Guillaume Jondeau will attend this meeting to represent VASCERN.

VASCA Working group monthly meeting

Webex from 3:45 pm to 5 pm

September 19th is Aortic Awareness Day (AD-Day): a day dedicated to raising awareness for aortic diseases!  Aortic Disease Awareness events are planned and hosted by hospitals and organizations in many countries around the world.

Within VASCERN, aortic diseases are covered by the Heritable Thoracic Aortic Diseases (HTAD) working group, which also includes diseases such as Marfan syndrome. Increasing awareness of these rare disorders is therefore essential in order to properly identify and diagnose these patients and provide them with the proper management and treatment plans.

Members of VASCERN will be present at an event organised by Dr. Alessandro Pini, Dr. Roberto Chiesa and Dr. Germano Melissano at San Raffaele Hospital, in Milan, Italy. The video featuring our coordinator (and HTAD-WG Co-Chair), Prof. Guillaume Jondeau and Lise Murphy (ePAG Co-chair for HTAD) entitled how VASCERN: how can it help you? will be viewed along with a video intitled The role of patients in the ERNs. Paolo Federici, ePAG advocate for Hereditary Hemorrhagic Telangiectasia (HHT), will also give a presentation entitled EPAG: patients’ point of view. Many other interesting presentations are expected all day long. Take a look at the program here

To register for this event, click here

To learn more about the other events organised around the world, refer to the list of events.

You can also follow all the latest news on AD Awareness Day 2019 at the Facebook page of Aortic Disease Awareness Day.

The 2019 Marfan Europe meeting will take place on 19-22 September 2019 in Drammen, Norway.

More information here

The Cure HHT Patient & Physician Conference will take place from September 21-22, 2019 at the Fort Lauderdale Marriott Pompano Beach Resort & Spa 1200 North Ocean Blvd. Pompano Beach, Florida 33062 USA.

For more information, click here 

The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).

Professor Guillaume Jondeau and 2 members of the coordinating HCP APHP Bichat-Claude Bernard, will attend this event.

For more informations : click here 

The International Society of Lymphology's (ISL's) 27^th International Congress of Lymphology will take place from September 23-28, 2019 in Buenos Aires, Argentina.

VASCERN members speaking at this event include Prof Miikka Vikkula and Prof Laurence Boon (VASCA-WG Chairs) and Prof Vaughan Keeley (PPL-WG member).

To see the full programme click here

For more information on this event, click here

The European Biotech Week celebrates biotechnology, an innovative and vibrant sector launched by the discovery of the DNA molecule back in 1953. The first European Biotech Week that took place in 2013 marked the 60th anniversary of this pivotal moment in history.

To have more information : click here

HTAD WG Monthly Meeting

HHT Working Group Monthly Meeting #30 from 8 am to 9 am (Paris time)

MSA-WG Monthly Virtual Meeting will take place from 6-7 pm.

For its 20 year anniversary, the Association Belge du Syndrome de Marfan (ABSM) is hosting a gala on Saturday, the 5th of October 2019 at the Palais des Académies in collaboration with the Foundation 101 Génomes (F101G) and the endorsement of VASCERN. The gala will start at 1:30 pm.

Professor Bart Loeys and Professor Julie de Backer will be speaking at this event respectively about:

• the state of the art of the research initiated by the Foundation 101 Génomes: Genome-wide Epistasis for cardiovascular severity in Marfan Study
• the long road to precision medicine for Marfan syndrome

Our ePAG members Charissa Frank (MSA-WG) and Romain  Alderwereldt (HTAD-WG) will also be in attendance at this event.

Prior to the gala, the scientific commitee of F101G will gather in the morning and members of our VASCERN HTAD working group will attend this meeting (Prof. Guillaume Jondeau, Prof Bart Loeys and Prof Julie de Backer).

To read the full programme and to register for the gala click here.

The British Lymphology Society (BLS) will hold their annual conference from October 7-8, 2019 in Yarnfield, UK. Pediatric and Primary Lymphedema (PPL) Working Group Members Prof. Vaughan Keeley and Prof. Kristiana Gordon will be speakers at this event.

For more information on this event, click here

The Nordic Society for Vascular Anomalies (NSVA) Meeting will take place from October 7th-8th, 2019 in Tuusula, Finland.

Prof Miikka Vikkula, Chair of the Vascular Anomalies Working Group (VASCA WG) will be giving a presentation on VASCERN and the VASCA WG and other VASCA WG members will also be giving presentations at this event, including Prof. Päivi Salminen, Prof Laurence Boon, Dr. Nader Ghaffarpour and Dr Kristiina Kyrklund.

For full programme, click here

The VASCERN European Patient Advocacy Group (ePAG) Monthly meeting will take place from 10-11am.

The VASCERN HHT WG meeting will take place on Friday, October 11th at 8 am (Paris time).

The Inter-ERN Working Group on Knowledge Generation will have their next meeting on October 15th, 2019 from 4-5:30pm.

VASCA-Working Group Monthly meeting from 3:45 pm to 5 pm

VASCA Lymphangiography task force

The Pediatric & Primary Lymphoedema Working Group  Monthly Meeting (PPL Monthly Meeting) from 5:30 pm to 6.30 pm.

The HTAD WG monthly meeting will take place from 5 to 6pm

The RARE 2019 Meetings is the 6th edition of an event organised every two years to promote a health and research policy at the service of people with rare diseases.

The RARE 2019 Meetings will be held on 5 & 6 November 2019 at the Cité des sciences et de l'industrie:

City of Science and Industry
30, avenue Corentin-Cariou
75019 Paris

Opening of the reception:

Tuesday, November 5: 7:30 am - 6:30 pm

Wednesday, November 6: 7:30 am - 5:30 pm

For more information, click here.

VASCERN Days 2019 is quickly approaching! This year, our annual seminar will take place in Brussels, Belgium from Novembre 7th, starting at 8:30 am, to November 8th, finishing at 4:30pm at the Radisson Blu Royal Hotel.

We look forward to welcoming around 100 participants to this event, including 65 HCPs representatives from 37 expert teams, 15 ePAGs from 15 Patient Organisations, 5 representatives from 4 of our newly appointed affiliated partners, and 11 stakeholders representing DG SANTE (European Commission),  Orphanet, FAVA-Multi (The French Network for Rare Vascular Diseases), Eurordis, EJP-RD, OpenApp, the French Ministry of Health, AP-HP Bichat Hospital and more!

Read the full programme here

The meeting will consist of several plenary sessions (including the annual board meeting) and two 4 to 5 hour long Rare Disease Working Group sessions as well as a dedicated VASCERN ePAG meeting. There will also be many opportunities for networking and sharing of ideas!

This year we are also doing our part for the planet by going paperless! All event documents (programme, information kit etc), will be provided to members on one of our brand new VASCERN USB flash drives! The flash drives will equally contain other important VASCERN documents for our members.

Please make sure to follow us on social media as we will be live tweeting throughout the two days with all the latest news and happenings using the hashtag #VASCERNDays2019! We encourage all our attendees to also participate!

The European Joint Programme on Rare Disease Information Day & Brokerage Event will take place on November 7th from 8:45 am to 4:30pm in Istanbul, Turkey.

See the programme here

The Monthly ePAG Meeting will take place on November 12th from 10am to 11:30am.

The Workshop of the ERN Research Working Group  with Research Infrastructures will take place in Brussels on November 13th, 2019.

VASCERN's coordinator, Prof Guillaume Jondeau, will be in attendance at this event.

The 9th ERN Coordinators Group (ERN-CG) Meeting will take place in Brussels from the 4th of November 2019 from 10 am -5:30 pm and the 15th of November from 9am -1 pm.

Prof Guillaume Jondeau, VASCERN coordinator, and Marine Hurard, VASCERN Project Manager, will be in attendance.

The VASCA Monthly meeting will take place on November 20th from 3:45pm to 5pm (Paris time).

Paris Lymphology Days will take place from November 21-22nd, 2019 in Paris, France. It will be hosted by Dr. Stéphane Vignes (PPL WG Member) and will feature numerous presentations, including one  by VASCA WG Chair Prof Miikka Vikkula on the genetics of lymphedema, as well as practical workshops.

To read the full program (in French) click here

For more information (in French) click here

The HTAD WG Monthly meeting will take place on Monday, November 25th from 5 to 6 pm (Paris time).

The EJP-RD is organising a Workshop and Hackathon: "Molecular pathways for rare disease (FAIR) data analysis" that will take place from November 26-29, 2019  at the University of Maastricht in The Netherlands.

All information on this event and registration here

The  webinar on the presentation of the repository of the ERNs document templates and taxonomy will take place on Wednesday 27 November 2019, 10h00-11h30 (GMT+1).

The course "challenges and choices in aortic valve and root surgery in younger patients" will take place at Glaziers Hall, London Bridge, London UK on November 11th, 2019.

Dr. Yaso Emmanuel (HTAD-WG member) is one of the course organisers for this event.

For more information, please click here

The MSA WG Monthly Meeting will take place on December 4th from 6 to 7pm (Paris time).

The VASCA Lymphangiography task force meeting will take place on December 9th at 1 pm (Paris time, UTC +1).

The Monthly ePAG Meeting will take place on December 10th from 10am to 11:30am (CET time zone).

The Meeting of the Knowledge Generation WG will take place on Tuesday December 10th, 2019. Natasha Barr will represent VASCERN at this meeting.

The PPL Monthly meeting will take place on December 16th, 2019 from 5:30pm to 6:30pm (Paris time).

The VASCERN HHT WG monthly meeting #33 will take place on December 16th, 2019 at 8 am (Paris time).

The VASCA Monthly meeting will take place on December 18th, 2019 from 3:45pm to 5pm (Paris time).

The VASCERN MSA-WG Monthly Meeting will take place on January 8th, 2020 from 6 pm to 7 pm (Paris time).

The VASCERN ePAG Monthly Meeting will take place on January 14th, 2020 from 10 am to 11:30 am (Paris time).

The European Days of the French Society of Cardiology will be held at the Palais des Congrès in Paris from January 15-18th, 2020.

Both Professor Guillaume Jondeau (VASCERN coordinator) and Professor Julie De Backer (Heritable Thoracic Aortic Diseases (HTAD) Working Group Chair) will be speaking at this event about aortic risk in Marfan Syndrome, monitoring of aortic dilatation in pregnant women with cardiovascular diseases, risk of aortic dissection during pregnancy and more! Assomarfans will also have an information booth at this event to raise awareness for Marfan disease.

For all information on this event, including the programme, click here

The VASCERN VASCA-WG Monthly Meeting will take place on January 15th, 2020 from 3:45 pm to 5 pm (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on January 20th, 2020 from 5:30 pm to 6:30 pm (Paris time).

The 23rd Conference on Immune Pathologies and Rare Diseases, organised by C.M.I.D. (Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare) will take place from January 22-25th, 2020 in Torino Italy.

Pernille Henriksen, ePAG co-Chair for the Pediatric and Primary Lymphedema (PPL-WG), and Elena Matta (ePAG patient advocate for PPL) will be in attendance at this event where they will be representing patients with primary lymphedema. Pernille will be speaking at a session on night time compression and workshops on primary lymphedema for patients and professionals will take place at this event.

See the preliminary programme here

The VASCERN HTAD-WG Monthly Meeting will take place on January 27th, 2020 from 5 pm to 6 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #34 will take place on January 27th, 2020 at 8 am (Paris time).

February is Marfan Awareness Month, a time for all of us in the community to escalate our efforts to increase Marfan awareness.

This year, the Marfan Foundation hopes you will join them in the #MarfanVictoryChallenge.

"The idea is to spread the word about Marfan syndrome – through social media; through community events, such as educational events or fundraisers at work, school, or other community settings; or through legislative activities, such as getting a local proclamation for Marfan Awareness Month."

More information on the Marfan Foundation website.

The VASCERN MSA-WG Monthly Meeting will take place on February 5th, 2020 at 6 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on February 11th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on February 17th, 2020 at 5:30 pm (Paris time).

The EURORDIS Black Pearl Awards will take place in Brussels, Belgium on February 18th, 2020.

This annual event recognises the outstanding achievements and exceptional work of people making a difference for the rare disease community, such as Claudia Crocione, our European Patient Advocacy Group (ePAG) Co-Chair for Hereditary hemorrhagic telangiectasia (HHT), who will be recognised with the EURORDIS Volunteer Award!

More information on this event here

The 29th EURORDIS Round Table of Companies Workshop will take place on February 19th, 2020 in Brussels, Belgium. It will be a full-day workshop dedicated to the topic of medicines’ repurposing.

To register and for more information on this event, click here

The VASCERN VASCA-WG Monthly Meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (Paris time).

The 9th VASCERN Council Meeting will take place on February 19th, 2020 from 5:30 pm to 7 pm (Paris time).

The first meeting of the Knowledge Generation Working Group of 2020 will be held on February 20th, 2020 at 11 am.

The VASCERN HTAD-WG Monthly Meeting will be taking place on February 24th, 2020 from 5 pm to 6 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #35 will take place on February 28th, 2020 at 8 am (Paris time).

The 13th edition of the Rare Disease Day will be held on February 29th, 2020 worldwide!

For this international day initiated by EURORDIS - European Rare Diseases Organisation, the French networks for rare diseases (including FAVA-multi) will be reaching out to the general public by organising various events to raise awareness in cities across France. VASCERN will attend their event happening in Paris, along with several other ERNs coordinated in Paris (including EuroBloodNet and ERN ITHACA)...more details to follow!

The communications material for Rare Disease day is available on here.

The VASCERN MSA-WG Monthly Meeting will be taking place on March 4th, 2020 at 6 pm (Paris time).

World Lymphedema Day 2020 will take place on March 6th, 2020.

This annual advocate-driven celebration aims to raise awaresness for all types of lymphatic diseases, primary and secondary lymphedema, lipedema, lymphatic filariasis, lymphatic malformations, and the full lymphatic continuum of diseases impacted by the lymphatic system.

In preparation of this international event, the patient advocates of our European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) have created various important documents, including:

• A Manifesto signed by 23 European patient associations, currently available in English, Portuguese, German, Italian and Dutch
• A World Lymphedema Day factsheet
• Overview document for how to celebrate World Lymphoedema Day

More information on the World Lymphedema Day website here.

The VASCERN ePAG Monthly Meeting will be taking place on March 10th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on March 16th, 2020 from 5:30 pm to 6:30 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).

The 7th ERN IT Advisory Group Meeting will take place online on Tuesday March 31st, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

The VASCERN ePAG Monthly Meeting will be taking place on April 14th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on April 15th, 2020 at 3:45 pm (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on April 20th, 2020 at 5:30 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).

Due to the COVID-19, the VASCERN VASCA-WG Meeting will now take place online. There will be NO on-site event in Brussels. The meeting will occur from April 28th to 29th, 2020 from 9 am to 13 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on May 12th, 2020 from 10 am to 11:30 am (Paris time).

Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23^rd Workshop for the Study of Vascular Anomalies, that was scheduled to take place in Vancouver, British Columbia, Canada from May 12-15, 2020 has been postponed by two full years, to 10-13 May 2022

In place of an in-person meeting in 2020, there will be an ISSVA Online Workshop on the Thursday and Friday of the original meeting dates: 14-15 May 2020!

The Scientific Program will be based on the in-person meeting's program and will be a venue to present the latest advances in research and science in vascular anomalies. ISSVA Online will provide a multidisciplinary forum for many specialties including - but not limited to - interventional radiologists, dermatologists, plastic surgeons, ENT surgeons, oncologists, pediatricians, pediatric surgeons, and pathologists.

Members of the Vascular Anomalies (VASCA) Working Group will attend this online event and various posters by the group will be presented.

Click here to register.

If you have already registered for the ISSVA 2020 (Vancouver) in person meeting, you can transfer your registration fees to the ISSVA Online Workshop by using the below survey: Transfer your ISSVA 2020 (Vancouver) Registration to the Online Workshop.

More information on the ISSVA Online Workshop here.

In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE from May 14th to 15th, 2020. There will be NO on-site event in Stockholm. 

More information here.

ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most. Outputs from these conferences have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.

The overarching theme for this conference is The rare disease patient journey in 2030. 

The European Joint Programme on Rare Diseases serves as official partner of the conference and VASCERN is proud to be an Associate Partner of this event.

Submissions for poster abstracts are open until February 10th, 2020. More information here.

Applications for the Patient Advocate Fellowship Programme are open until December 2nd, 2019. More information here.

For more information on this event, take a look at the official ECRD website or the ECRD LinkedIn page.

VASCERN will hold a webinar on Thursday May 14, 2020 from 5:30-7pm CET on Heritable Thoracic Aortic Diseases (HTAD) and Covid-19.

This webinar features a brief introduction on COVID-19 and the cardiovascular system, followed by a Q&A session!

Elena De Moya Rubio (ePAG Co-Chair for HTAD) and Françoise Steinbach (ePAG Deputy Co-Chair for HTAD) will ask the questions provided by HTAD patients (collected by Elena) and they will be answered by HTAD WG Chair and Co-Chair, Prof. Julie De Backer and Prof. Guillaume Jondeau.

The webinar will take place on the WebEx platform. To receive the WebEx link to connect to the webinar (or to receive the recording), please register below:

Please note all personal data collected will only be used to send the links and will be deleted after the webinar.

The Rare Diseases International (RDI) 6th Annual Meeting will be hosted completely online from May 18th to 19th, 2020. This event will bring together rare disease patient organisations from Latin America, North America, Europe, Asia and Africa to learn from each other and carry the voice of patients from their disease areas, countries and regions.

For more information on this event and to see the programme, click here.

The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).

The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).

Due to the COVID-19, the VASCERN PPL-WG Meeting will now take place online. There will be NO on-site event in Helsinki. The meeting will occur from June 4th to 5th, 2020 from 9 am to 12 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).

In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE has been organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat the patients with COVID-19.

The webinar: "Impact of COVID 19 for people living with a Rare Disease" will take place on Tuesday, June 9th, 2020 from 11.00 – 12.00 CET and will feature speakers from EURORDIS (Inés Hernando, ERN and Healthcare Director and Sandra Courbier, Social Research Director). The results of the latest Rare Barometer Survey, "Rare disease patients' experience of COVID-19", will be presented!

To join the webinar, click the following link: https://europaevent.webex.com/europaevent/onstage/g.php?MTID=ee90be256b3426dd2ef596106f27bdc45

meeting ID (access code) (if requested): 956 694 201

For agenda and more technical information on how to join, click the link here.

Due to the COVID-19, the VASCERN HHT-WG Meeting will now take place online. The meeting will occur on June 12th, 2020 from 9 am to 12:30 pm (Paris time).

The Internal ERN Coordinator's Group Meeting will take place online on June 15th, 2020 at 6:30PM.

The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).

Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.

EURORDIS will organise a webinar on June 18th from 16.30 to 18.00 (CEST) to provide an opportunity to have a preliminary discussion on what are the data needs of the ERNs and how to progress towards a comprehensive ERN data strategy.

The webinar is open to ePAG advocates, RD National Alliances and EU Federations, ERN Coordinators and Project Managers, Hospital Managers, European Commission and all interested in attending.

Please register using the following link: https://us02web.zoom.us/webinar/register/WN_-cl6DH9lQLe-15MHOPJp0w 

The VASCERN HTAD-WG Monthly Meeting will take place on June 22nd, 2020 at 5 pm (Paris time).

Due to the COVID-19, the VASCERN MSA-WG Meeting will now take place online. The meeting will occur on June 25th, 2020 from 2 pm to 5 pm (Paris time).

This year, the annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place online from 9AM-1:30PM on Friday June 26th, 2020.

VASCERN Project manager, Marine Hurard, will give a short presentation on the latest VASCERN and ERN news and will answer any questions.

The 1st ERN Transversal Study Group on Pregnancy and Family Planning will take place on Monday July 6th, 2020 at 3:30PM CET.

This new ERN Study Group will allow for the creation of strong synergies with already existing initiatives as well as promote a transversal approach to the important topic of pregnancy and family planning in all rare and complex diseases. Members of VASCERN (Professor Julie De Backer (HTAD WG Chair) and Doctor Leema Robert (MSA WG Chair)) will be in attendance at this event along with members from at least 18 other ERNs.

The VASCERN Registry WG Kick-Off Meeting will take place online on July 9th, 2020 at 2:30 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on July 14th, 2020 from 10 am to 11:30 am (Paris time).

The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15^th to July 17^th 2020.

The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.

For more information, go to their website.

The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).

The ERN Project Managers Meeting (part 1 of 2) will take place on Wednesday July 15th, 2020 at 9AM. Marine Hurard, VASCERN Project Manager, will be in attendance at this event.

The 2020-2 CEF Telecom call virtual Info Day will take place on Thursday 16 July 2020 and will cover seven priorities of the 2020 CEF Telecom calls that opened on June 30th, 2020.

• BRIS
• Cybersecurity
• eArchiving
• eHealth 
• eProcurement
• European Digital Media Observatory
• European Platform for Digital Skills and Jobs
• Public Open Data

Register here

For agenda and more information, visit the event page here

The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #38 will take place on July 24th, 2020 at 8 am (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E³ International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.

CLICK HERE TO REGISTER NOW!

Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.

Highlights include:

• The ABCs of Marfan in six different languages
• Research talks that address recent breakthroughs and hope for the future
• Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
• A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
• Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
• Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
• Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
• Opportunities to connect with other people in the worldwide community through the Summit app

See the full agenda here

For the latest information on this event, visit the event page on the Marfan Foundation website here

The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.

For more information visit the event's website here.

The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on September 8th, 2020 from 10 am to 11:30 am (Paris time).

The European Joint Programme on Rare Diseases (EJP RD)'s second General Assembly and Consortium meeting will take place from 14 to 18 September 2020. Due to Covid-19, the 2020 GA meeting will be held online.

The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).

The 12th VASCERN Council Meeting special VASCERN Days 2020 will take place online on September 18th, 2020 at 5 PM (CET).

The Joint brainstorming session of the ERN Board of Member States and ERN Coordinators Group will occur online on Friday September 18th, 2020 from 9 AM to 12 PM (CET).

Aortic Dissection Awareness Week will take place from September 19-26, 2020 and is a week to raise awareness about aortic disease around the world. It is a day to create community for people who care about aortic disease, to celebrate survivors, and to share life-saving information in order to reach people who are at risk.

Many events will be taking place around the world, such as a free virtual conference by the John Ritter Foundation and the Genetic Aortic Disorders Association Canada- register here

You can also raise your hands for Aortic Disease Awareness here

For more information, follow the AD Awareness week Facebook page here

The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).

The European Medicines Agency (EMA) is organising a virtual workshop on benefit-risk of medicines used during pregnancy and breastfeeding on September 22nd, 2020 from 12 PM to 17:25 PM (CET).

The next inter-ERN Knowledge Generation Working Group Meeting will be held on September 23rd, 2020 from 2 PM to 3:30 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

The ERNs Indicator Webinar will occur online on September 24th, 2020 from 2 PM to 5 PM (CET).