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…

Continue reading

Research News: Hereditary Hemorrhagic Telangiectasia WG publication on the safety of direct oral anticoagulants

The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) has just published an article entitled Safety of direct oral anticoagulants in patients with hereditary hemorrhagic telangiectasia in the Orphanet Journal of Rare Diseases. It is equally co-authored by one member of EuroBloodNet. This publication examined the safety of three direct oral…

Continue reading

VASCERN leaflet now available!

We are very proud to release the new VASCERN information leaflet! This leaflet contains a concise overview of our network, including the presentation of our five Rare Disease Working Groups, our members (healthcare providers and ePAG patient organisations) and highlights the various services and material we offer to patients and…

Continue reading

New VASCERN Affiliated Partner from Spain!

With the bilateral cooperation agreement signed, VASCERN has its first official Affiliated Partner: Hospital Universitari Vall d’Hebron from Barcelona, Spain! This Spanish Healthcare Provider, which is an Associated National Centre, will be represented by Dr. Arturo Evangelista and Dr. Gisela Teixido, two cardiologists working in the Expert center with specialized…

Continue reading

Research News: dedicated page now on VASCERN website

Each month we aim to publish an article presenting a new collaborative scientific publication by our network. These articles, along with any other research-related pieces featured in our monthly newsletter, can now be accessed directly via a dedicated Research News page on our website. VASCERN aims to promote European cooperation…

Continue reading