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 …
We would like to extend a warm welcome to our new Project Assistant: Anne-Marie Defo. Anne-Marie joined us at the end of August, replacing our previous Project Assistant, Aurélie Collomb. Here’s what she has to say: My name is Anne-Marie Defo and I am glad to join VASCERN as the …
The French network on rare multisystemic vascular diseases (FAVA-Multi) has released a series of tutorial videos for children with Pediatric and Primary Lymphedema (PPL). These videos were filmed during a therapeutic patient education trip organised by the Reference Center for Primary Lymphedema at Hôpital Cognacq-Jay (VASCERN member of the PPL-WG). …
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 …
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 …
The Vascular Anomales Working Group (VASCA WG)‘s first patient pathway, Severe/Rare Infantile Hemangioma, has now been translated into three new languages: We thank the Healthcare professionals from the VASCA WG for validating the translations of these pathways in their native languages. Additional languages should be added soon. The other Rare …
A new article has been published in ALS New Today that talks about the European Joint Programme on Rare Diseases (EJP RD), established in January 2019, with its coordinator Daria Julkowska. EJP-RD is an International consortium based in Paris, funded largely by the 28-member European Union, which intends to speed …
During the event « Equal access to care for rare diseases » organised by Friends of Europe (a leading Brussels-based think tank), that took place in Brussels on June 26, 2019, Eurordis’ CEO Yann Le Cam highlighted the success of the policies put in place to support people with rare diseases. He …
Following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU, The European Commission will launch in the coming weeks the first call for new Healthcare Providers (HCP) full members to join the existing 24 ERNs. The concrete date for the opening and closing of the …
A new article entitled RASA1 mosaic mutations in patients with capillary malformation-arteriovenous malformation has recently been published in the Journal of Medical Genetics. It is co-authored by members of the VASCERN Vascular Anomalies Working Group (VASCA WG) including Prof. Miikka Vikkula, Prof. Laurence Boon, Prof. Alan Irvine and Dr. Veronika …
