VASCERN is happy to report that we have enrolled out first two patients, one from France and one from the Netherlands, in the Clinical Patient Management System (CPMS). We also just launched our first panel in the CPMS, with more than 10 HCP representatives from 7 countries participating! The CPMS …
The European Commission has opened a call for feedback in which research and innovation stakeholders, as well as the general public, can provide their input on the report prepared by Professor Mazzucato regarding the proposal of the next research and innovation EU framework programme. The results of this consultation will be …
The VASCERN coordination team is looking for full-time administrative assistant to join us in Paris, France! The ideal candidate must be fully bilingual in both French and English. Read the full job description (in French) here We take this opportunity to also mention that we are now on LinkedIn! This …
Results from the Rare Barometer Voices survey on “Patients’ Participation in Research” have been published! Survey participants of Rare Barometer Voices are a community of people living with a rare disease who participate in EURORDIS-Rare Diseases Europe surveys and studies. This survey aimed to assess rare disease patients’ level of …
A new scientific publication on arterial tortuosity syndrome has been published online (advance online publication) in Genetics of Medicine. The publication, entitled Arterial tortuosity syndrome: 40 new families and literature review, is co-authored by several VASCERN HCP representatives including Prof Julie De Backer (Chair of the HTAD-WG), Dr Sophie Dupuis-Girod …
For Rare Disease Day 2018, the VASCERN coordination team was present at the Rare Disease Village, along with 2 other ERNs, 17 French Rare Disease Networks, 17 patient associations, The Rare Disease Expertise Platform in the South of Paris, and The French Rare Disease Alliance (Alliance Maladies Rares), in Paris …
For the occasion of Rare Disease Day 2018, the European Reference Networks Coordinators Group (ERN-CG) released a position statement regarding the UK’s involvement in the ERN project post-Brexit. The Network coordinators call upon the European Commission and the UK government to ensure that a solution is found so that the …
This year, February 28th marked not only Rare Disease Day but also the official one year anniversary of the 24 European Reference Networks (ERNs), which were approved to receive the ERN label by the ERN Board of Member States on December, 2016 and were officially launched on March 1st, 2017! …
VASCERN is a European Reference Network, an EU Project co-funded by the European Union 3rd Health Programme. Under the 5 year Framework Partnership Agreement (FPA) with the European Commission, VASCERN has signed a Specific Grant Agreement (SGA) for its first year of activities as an official ERN. As February is our Month …
The first Pill of Knowledge (PoK) by the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG) is now available on our YouTube Channel! This PoK is on the topic of Marfan Syndrome and is produced by HTAD-WG Chair Prof Julie De Backer. This PoK gives an overview of the diagnosis …
