VASCERN Spotlights: Professor Sahar Mansour

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…

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News from the Marfan Europe Network (MEN) meeting!

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…

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New scientific paper using Orphanet data provides prevalence figures on number of people living with a rare disease globally

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…

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