The Medium-Sized Arteries Working Group (MSA WG) held a brief face-to-face meeting in London on the morning of July 1st, 2019. Chaired by Dr. Leema Robert, the meeting was attended by healthcare representatives from Belgium, France, Italy and The Netherlands. Items discussed were the Marfan Foundation statement on celiprolol and…
As presented in a previous article, Bakoumba is a Marfan children’s book, originally published by the French Marfan Association – Association MARFANS, which is now being translated into various European languages. VASCERN has been collaborating with Association MARFANS and the Marfan Europe Network in order to manage the translations of Bakoumba and…
The Belgian Association of Marfan Syndrome (ABSM) celebrated their 20 year anniversary on Saturday October 5th, 2019 at the Palais des Académies in Brussels, Belgium. VASCERN was very pleased to endorse this event and had several of our members in attendance (both ePAG patient advocates and healthcare provider (HCP) representatives).…
For new HCPs, not yet a member of VASCERN The European Commission has just launched the call for new Healthcare Providers Full Members to join the existing 24 European Reference Networks (ERNs), which will run from September 30th until November 30th, 2019. We look forward to expanding our network to…
In this edition of VASCERN Spotlights we meet Professor Sahar Mansour from London, UK, Prof Mansour is Co-Chair of the Pediatric and Primary Lymphedema (PPL) Working Group and talks to us about her interest in genetics and primary lymphedema, the challenges faced when trying to interpret genetic results in lymphedema…
The Marfan Europe Network (MEN) meeting took place from September 19-22, 2019 in Drammen, Norway and was hosted by the Norwegian Marfan Association (Marfanforeningen). This biennial meeting is a chance for the various European Marfan patient organisations (members of MEN) to meet, discuss common projects and listen to a variety…
A new collaborative research paper entitled A Clinical Feasibility Study To Image Angiogenesis in Patients With Arteriovenous Malformations Using 68Ga‐RGD PET/CT has just been published in the Journal of Nuclear Medicine. It is co-authored by members of the Vascular Anomalies Working Group (VASCA WG) including Chairs, Prof Miikka Vikkula and Prof Laurence Boon,…
Great news for the rare disease community: for the first time, the 193 United Nations (UN) Member States adopted a political declaration on universal health coverage (UHC) that includes the mention of Rare Diseases on September 23rd, 2019! This significant milestone is the result of various advocacy steps taken over…
The Pediatric and Primary Lymphedema Working Group (PPL WG) held a face-to-face meeting at St. Georges University Hospital in London from September 12-13th, 2019. This 2-day event was hosted in our HCP Member St George’s University Hospital and co-chaired by Dr. Malou van Zanten (PPL WG member), Prof. Sahar Mansour…
A new scientific paper entitled “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database“ has just been published in the European Journal of Human Genetics. This paper is co-authored by Orphanet (coordinated by INSERM, the French National Institute of Health and Medical Research), EURORDIS – Rare Diseases…
