VASCERN at the 5th annual FAVA-Multi Day!

The 5th Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day took place on Friday June 7th, 2019 in Paris, France. Professor Guillaume Jondeau, VASCERN and FAVA-Multi coordinator, opened the event in the morning and welcomed the French healthcare professionals and patient advocates in attendance. As members of the French…

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VASCERN Spotlights: Dr Sophie Dupuis-Girod

This month we have the pleasure to interview Dr. Sophie Dupuis-Girod from Lyon, France. Dr Dupuis-Girod is Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group and talks about how she became interested in this rare vascular disease, her involvement in VASCERN and what she believes are the greatest achievements…

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New scientific publication on Long-Term Observational study of vEDS

A new publication, co-authored by Dr. Michael Frank (Medium-Sized Arteries Working Group (MSA-WG) Co-Chair), Prof. Xavier Jeunemaitre and Dr. Salma Adham (members of the MSA WG) and entitled Vascular Ehlers-Danlos syndrome: Long-Term Observational study, has recently been published in the Journal of the American College of Cardiology. Vascular Ehlers-Danlos syndrome (vEDS)…

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EURORDIS Membership Meeting 2019 in Bucharest

The 2019 EURORDIS Membership Meeting took place in Bucharest, Romania from May 17-18, 2019. This meeting assembled over 200 representatives of people living with a rare disease. During this event, Eurodis and its over 800 member organisations released a new position paper entitled Achieving Holistic Person-Centred Care to Leave No One…

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