With the 15 deliverables of our second year of VASCERN activities submitted to the European Commission on February 28th, 2019, VASCERN is now looking towards the future! Under the 5 year Framework Partnership Agreement (FPA) with the European Commission, VASCERN has signed the new Specific Grant Agreement (SGA) for Years …
The data collection of the 18 ERN core indicators for 2017 and 2018, defined for continuous monitoring of ERNs, has been submitted on March 29th, 2019 for VASCERN. The set of indicators were prepared by the ERN Continuous Monitoring working group (after a year long discussion), approved by the ERN …
This month we have the pleasure to feature Claudia Crocione, our ePAG Co-Chair for the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group, in the VASCERN Spotlight. Claudia is the Managing Director of HHT Europe and she shares with us how she became involved with VASCERN and her experience so far, what …
The first patient pathway from the Vascular Anomalies Working Group (VASCA-WG) is now available! The first patient pathway to be published by the group is on Severe/Rare Infantile Hemangioma. Link to the Patient Pathway on Severe/Rare Infantile Hemangioma here You can equally find the patient pathway on the Patient Pathway …
The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) held its 1st face to face meeting in the framework of VASCERN’s 3rd year of activities on the 8th of March, 2019 at Hammersmith Hospital in London, UK. It was hosted by Professor Claire Shovlin, Chair of the HHT-WG, and was attended by …
The European Commission launched a new online knowledge-sharing platform, called the European Platform on Rare Diseases Registration -EU RD Platform, for the occasion of Rare Disease Day on February 28th, 2019. The aim of this platform is to make data from rare disease registries searchable at an EU level and …
A new video has been released by the 23 French National Rare Disease Networks (FSMR – Filières Santé Maladies Rares) that explains why they were created by the French Ministry of Health, their structure, their missions and how they interact with the European Reference Networks on Rare Diseases. The video …
Vytenis Andriukaitis, the European Commissioner for Health and Food Safety, released an article on Rare Disease Day 2019, which coincides with the two year anniversary of the European Reference Networks (ERNs). In this message he talks about Onni, the five year old boy from Finland with a rare form of …
VASCERN is pleased to support the 3 a week campaign that has been launched by the patient advocates and healthcare professionals of the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG). This initiative aims to inspire people with Marfan syndrome and related HTAD to participate in a suitable form of physical …
