VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
Following an election process organised by Eurordis this summer, Juergen GRUNERT was appointed as the new Chair of the VASCERN European Patient Advocacy Group (ePAG). Juergen Grunert is already the ePAG Co-Chair for the MSA-WG and is equally Chairman of the Deutsche Ehlers-Danlos-Initiative e.V., the oldest patient organization in Germany. We thank him for his continued dedication and commitment.
VASCERN’s 5 ePAG Co-Chairs (1 per Rare Disease Working Group) are:
- Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG): Claudia CROCIONE from HHT Europe and Associazione Italiana Teleangectasia Emorragica – HHT ONLUS
- Heritable Thoracic Aortic Disease Working Group (HTAD-WG): Lise MURPHY from the Swedish Marfan Association
- Medium-Sized Arteries Working Group (MSA-WG): Juergen GRUNERT from Deutsche Ehlers-Danlos-Initiative e.V.
- Pediatric and Primary lymphedema Working Group (PPL-WG): Natascha ASSIES from the Dutch Lymphedema & Lipoedema Network (NLNet)
- Vascular Anomalies Working Group: Caroline VAN DEN BOSCH from HEVAS
Finally, a new official logo for the 24 ePAGs linked to the European Reference Networks has been developed by Eurordis in cooperation with the European Commission:
