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

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

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

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  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 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 HTAD WG Monthly meeting will take place on Monday, November 25th from 5 to 6 pm (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 VASCA Monthly meeting will take place on November 20th from 3:45pm to 5pm (Paris time).

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

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 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.

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

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

VASCA Lymphangiography task force

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

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

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

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

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

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.

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

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

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

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 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 

HTAD WG Monthly Meeting

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

More information here

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.

VASCA Working group monthly meeting

Webex from 3:45 pm to 5 pm

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.

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 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.

VASCERN Monthly ePAG monthly meeting

VASCERN HTAD clinical outcome measures

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 

25-27 Aug 2019

Krakow, Poland

ICE Kraków Congress Centre

Registration free until 01.08.2019

For more informations click here or 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.

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 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.

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

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.

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.

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 

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

 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 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!

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 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

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

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 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

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 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 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 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 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.

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

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

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'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.

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

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

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)

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.

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.

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 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 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.

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 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 

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 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