VASCERN Newsletter #32 - September 2019

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

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

The VASCA-Working Group Monthly meeting will take place from 3:45 pm to 5 pm.

The Pediatric & Primary Lymphoedema Working Group  Monthly Meeting (PPL Monthly Meeting) will take place 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's annual seminar, VASCERN Days 2019, will take place in Brussels, Belgium and will run from Novembre 7th, starting at 8:30 am, to November 8th, finishing at 4:30pm.

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. About 100 participants will be in attendance including more than 60 HCPs representatives from 37 expert teams, 14 ePAGs from 14 Patient Organisations, and 8 stakeholders representing Orphanet, DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases), Eurordis, EJP-RD and more!

General overview :

Day 1: Thursday, November 7th, 2019

8.00-8.30: registration & welcome coffee

8.30-13.00: annual board meeting

13.00-14.00: networking lunch

14.00-18.00: Rare Disease Working Groups (RDWG) - parallel sessions

20:00 onwards:  networking evening dinner at the restaurant  (The Kwint, Mont des Arts 1, 1000 Brussels, belgium)

Day 2: Friday, November 8th, 2019

8.00-8.30: registration & welcome coffee

8.30-9.30: sharing of RDWG best practices and ideas in the plenary

9.30-15.30: Rare Disease Working Groups - parallel sessions, including 2 hours of interRDWGs sessions, and 1 hour break for lunch

15.30-16.30: Debriefing and conclusions in plenary session

16h30 onwards: departure of participants

We look forward to our annual meeting and will be sure to report on the various news from the day via our social media channels (using the hashtag #VASCERN Days2019)!

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 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 International Congress Of Research On Rare And Orphan Diseases co-organized with IRDiRC and EJP RD will take place from March 11-14, 2020 in Berlin, Germany.

• To see the agenda: click here 
• To see the time table : click here 
• To make your registration : click here 

 

The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.

For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.

For more information, click here.

The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23^rd  Workshop for the Study of Vascular Anomalies,  in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.

The Scientific Program will be a venue to present the latest advances in research and science in vascular anomalies.  It will also feature introductory and advanced sessions that attendees can use to increase their knowledge in the fundamentals and advanced topics in the field.  ISSVA 2020 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.

The ISSVA Workshop has continuously grown thanks to your dedication to the field and participation in the meeting. We invite you to participate in ISSVA 2020 to help us continue this trend of knowledge sharing through oral presentations, difficult cases, and poster sessions.

More information here

The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.

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. We will address the issues that matter today to rare disease patients and those who support them, while also anticipating the needs of tomorrow's rare disease patients and families so that innovative and sustainable responses can begin to be developed.

The European Joint Programme on Rare Diseases serves as official partner of the conference. For more information, click here.