VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
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 call and received a very good technical assessment from the Independant Assessment Body following the review of the application and supportive documentation submitted in June and September, and the on-site audit of VASCERN and its Coordinating HCP, CRMR Marfan and related Disorders (APHP, Hospital Bichat), conducted in October.
Congratulations and thanks to all our Members for this successful application, hard work, high involvement and commitment for the success of this complex ERN application process, as well as for the successful Membership application to the VASCERN.
This new ERN and all its projects will surely bring about high added value to the Rare Multisystemic Vascular Diseases community, and will help facilitate and improve diagnosis, treatment and care for all patients in rare vascular diseases to improve quantity and quality of life of these patients.
There are a lot of challenges, and continuous high commitment and involvement from all is needed for the benefit of the Rare Diseases Community, and for these ERNs to deliver successfully all their potential.