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

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.

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 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

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 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

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 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

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 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

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

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

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 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 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 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 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 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 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

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 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.

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 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

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 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

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 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 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.

More information at www.research4rare.de 

Announcement

All information on this conference here

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.

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

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 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

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 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 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 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 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!

VASCA WG submeeting on Orphanet classification

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

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.

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 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

VASCA WG submeeting on Orphanet classification