VASCERN (as well as other European Reference Networks for rare diseases) has answer to the Connecting Europe Facility Telecom Call 2017 on eHealth for ERNs last September. VASCERN’s proposal as well as other ERNs proposals have been selected for Funding! Next steps are the Preparation and signature of the grant agreements by June …
The 11th edition of Rare Disease Day 2018 takes place on February 28th, 2018 and to mark this International day of raising awareness for rare diseases, VASCERN will be attending the “Rare Disease Village”, organized by the French Rare Disease Networks (Filières de Santé Maladies Rares), at La Canopée des …
The latest edition of OrphaNews features an editorial dedicated to the European ReferenceNetworks (ERNs), highlighting their first year of achievements and the challenges they still face ahead. Many topics are covered including the successful launch and implementation of the Clinical Patient Management System (the virtual consultation tool), data integration and interoperability in ERN registries, the Governance structures of the …
We are pleased to announce that the full report from VASCERN’s First Annual Seminar (#VASCERNdays2017) is now available! This comprehensive report details the two day seminar that took place in Paris, France on October 13-14, 2017 and that was attended by over 80 participants from all across Europe (Read our …
We are very pleased to announce that the first two Pills of Knowledge (PoK) produced by VASCERN are now available on our YouTube channel! These first two PoK have been created by the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). The first video entitled, “An Overview of Hereditary Haemorrhagic Telangiectasia” features …
A new publication, co-authored by Prof Alessandro Pini (VASCERN eHealth and Training & Education Chair and HTAD-WG and MSA-WG member), entitled “Impaired Central Pulsatile Hemodynamics in Children and Adolescents With Marfan Syndrome” is now available. This study focuses on a cohort of children and adolescents with Marfan syndrome (MFS), a rare vascular …
The Marfan Foundation announces the “Marfan Syndrome and Related Disorders Empowerment Series”, a new series of webinars that will focus on topics that aim to improve the quality of life of people living with Marfan Syndrome and related disorders. Their first webinar will be on January 30th, 2018 at 3PM …
The European Commission has adopted the 2018 Annual Workplan for the 3rd EU Public Health Programme. EU Funding and calls linked to the European Reference Networks and Rare Diseases are the following: OrphaCodes, to support the implementation of OrphaCodes for rare diseases by Member States – EUR 750 000 (p. 16) Multiannual …
We are excited to report on a new large-scale research Program called Solve-RD! The Solve-RD research program is a project funded by the EU’s Horizon 2020 that will directly involve the European Reference Networks (ERNs) in order to diagnose currently undiagnosed rare disease patients using the latest in genetic technologies …
The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended …
