A new rare disease project, called Share4Rare, has just been launched! This project, funded by a Horizon2020 grant from the European Commission, is a digital platform that aims build a virtual community that allows rare disease patients, carers, clinicians and researchers to join forces. Their goal: ” Create the largest …
The document outlining the Third Programme for the Unionʼs action in the field of health (Work Programme for 2019) is now available to view here Many actions concern specifically the European Reference Networks: Rare disease registries for the European Reference Networks (2.1, pages 8-9, announcing a future call for proposals …
In order to support the European Commission’s actions and to improve the management of rare diseases, Eurordis has launched the #Pledge4RD campaign to challenge Members of the European Parliament (MEP) to pledge their support for rare diseases before the upcoming European elections (May 23-36, 2019). Their idea is simple: contact …
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 …
