2017 is EURORDIS-Rare Diseases Europe, the European association representing rare diseases, 20th anniversary. This is the opportunity to look at 20 years of achievements and challenges ahead: here
Category Archives: News
New collaborative publications have been published these last months by the Chairs of VASCERN Pediatric and Primary Lymphedema Working Group, Dr. Robert Damstra and Prof. Sahar Mansour and her HCP substitute representative, Prof Peter Mortiner: Circumferential suction-assisted lipectomy in the treatment of primary and secondary end-stage lymphoedema of the leg. Lamprou …
The European Commission (DG Santé) has adopted on January 26th the Work Programme 2017 under the 3rd Health Programme. This WP includes funding for supporting European Reference Networks (ERNs) with a total budget of 4 600 000 euros (maximum 200 000 euros per ERN for coordination, management and non-clinical activities, through a Specific …
A new HTAD-WG collaborative research paper has been published by Prof Guillaume Jondeau and CRMR Marfan team members (Dr Olivier Milleron, Maud Langeois, Myrtille Spentchian, Prof Catherine Boileau) as well as HTAD-WG and HHT-WG Members (Prof Julie de Backer, Prof Yskert Von Kodolitsch, Dr Sophie Dupuis-Girod) and Centers cooperating with the network (Prof …
The European Commission has published a Call for proposals for Projects on Rare Disease Registries for approved ERNs on December, 21st. EU CALL RARE DISEASES REGISTRIES (PJ-06-2016) Aim: increase knowledge on rare diseases and develop clinical research Eligibility: only approved ERNs are eligible to be co-funded. Are eligible applicant organisations …
Presentations and report of the conference are available here
The paper on the identification of the cause of BRBN syndrome was published in the January issue of Journal of Investigative Dermatology. This collaborative research paper has been written by VASCern VASCA-WG Chair, Prof Miikka Vikkula, Prof Laurence Boon and their team members Julie Soblet, Antonella Mendola, Raphaël Helaers, Melanie Uebelhoer, HCP …
Read the EU report here
VASCERN with its 31 HCP Members has been validated today, December 15th, by the Board of Member States representatives as an official European Reference Network, following our answer to the first ERN Call. (see: http://ec.europa.eu/health/ern/implementation/call_en ) As a reminder, VASCERN and its 31 HCP Members have applied to the first ERN …
This workshop was help during in May 2016. Presentations and report here, including on: best practice guidelines in the context of rare disease European Reference Networks tools developed by the RARE-Bestpractices project to collect best practices guidelines and research recommendations methodology to appraise clinical guidelines for rare diseases the power …