We are thrilled to announce the publication of European Reference Network for Rare Vascular Diseases (VASCERN) Outcome Measures For the Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Journal of Rare Diseases (OJRD). This Clinical Position Statement is based on the 5 Outcome Measures selected by members of the VASCERN HHT-WG. …
The grant proposal for the European Joint Programme on Rare Diseases (EJP-RD) was accepted in August by the European Commission (see call information here)! This programme aims to develop an efficient model of financial support for all types of rare disease research by the creation of a research and innovation …
In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals …
The Aortic Disease (AD) Awareness Day will take place on September 19th, 2018. This annual event aims to raise awareness of aortic diseases by the organisation of events all around the world. The rare diseases covered by the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) are associated with an increased …
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. …
The Hereditary Haemorrhagic Telangiectasia (HHT) Patient Pathway is now available in French! Developped by the VASCERN HHT-WG, this document was kindly translated by the The French Network for Rare Multisystemic Vascular Diseases (FAVA-Multi). Patient Pathways aim to improve the care and management of patients with a rare disease. They are …
EpiCare and ERKNet have joined forces to create a cross-ERN e-histopathology task force! This new task force aims to create a digital pathology database in order to tackle rare diseases. ERN partners engaged in the histopathology (and tissue-based molecular-genetic) work-up of rare diseases are encouraged to join! The first web-conference …
The much loved ERN presentation video clip and the ERN video reportages, produced in 2017, are now finally available in all European languages! The ERN presentation video clip is available in two formats: dubbed version in all EU languages + Norwegian dubbed and subtitled version in all EU languages + …
A new scientific publication entitled Clinical Validity of Genes for Heritable Thoracic Aortic Aneurysm and Dissection, co-authored by several VASCERN HCP representatives including Prof Julie De Backer (Chair of the HTAD-WG), Prof Catherine Boileau (HTAD-WG member), Dr Leema Robert (Chair of the MSA-WG) and Prof Bart Loeys (member of the HTAD and …
VASCERN Spotlights: Professor Julie De Backer The ultimate goal is to provide patients with these rare diseases with the right care in a timely manner – my greatest hope, therefore, is that the central ERN message “Share – Care – Cure” will become “Excellent Sharing – Excellent Caring – Excellent …
