A new scientific paper entitled Expert consensus recommendations on the cardiogenetic care for patients with thoracic aortic disease and their first degree relatives has been published! This consensus statement is co-authored by several of our HTAD-WG members including Dr Marlies Kempers (Radboud university medical center), Bart Loeys (University Hospital of Antwerp), …
World Health Day was held on April 7th, 2018. This yearly event, founded by the World Health Organization, aims to encourage dialogue about the importance of Universal health coverage (UHC) while pointing out the inequalities to healthcare access that currently exist in the world and even across Europe. Vytenis Andriukaitis, the …
Dr. Ana Rath, Director of Orphanet, gave an interview about eHealth and its beneficial use in the European Reference Networks (ERNs) that appeared in the Rare Disease supplement from Mediaplanet UK that was distributed with The Guardian on Rare Disease Day 2018. In this article she talks about how “technology can help the rare disease …
VASCERN Spotlights: Professor Miikka Vikkula This month we interview the Chair of the Vascular Anomalies Working Group (VASCA WG), Professor Miikka Vikkula, a human geneticist from Brussels, Belgium. Prof Vikkula talks about the challenges of working in the rare disease field and the amazing progress that has been made to …
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 …
