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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VASCERN Spotlights: Caroline van den Bosch

VASCERN Spotlights: Caroline van den Bosch In this month’s VASCERN Spotlights we meet Caroline van den Bosch from the Netherlands.  Caroline is the European Patient Advocacy Group (ePAG) Co-Chair for the Vascular Anomalies Working Group (VASCA WG) and shares with us how she became involved in VASCERN, the history behind…

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CPMS Update and HTAD WG case discussion

This month the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) held a videoconference meeting using the Clinical Patient Management System (CPMS) in order to discuss a complex patient case. Eight Healthcare Professional (HCP) Representatives from 7 European countries (Belgium, France, Germany, Hungary, The Netherlands, Sweden and the United Kingdom)…

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GeneReviews on Lymphedema-Distichiasis Syndrome updated

The GeneReviews, article on Lymphedema-Distichiasis syndrome (LDS), a disease covered by the Pediatric and Primary Lymphedema Working Group (PPL WG), has just been updated. It is co-authored by Prof Sahar Mansour (Co-Chair of the VASCERN PPL WG) and Dr. Peter Mortimer (PPL-WG member). Lymphedema-distichiasis syndrome is a syndromic lymphedema disorder…

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