During the HHT Europe annual meeting, which took place in Hamburg this month, the HHT patient organisations members of our VASCERN ePAG for HHT had a face-to-face meeting. The ePAG for HHT is chaired by Claudia Crocione from HHT Europe. Christina Grabowski, ePAG representative for HHT Germany (Morbus Osler) within …
It was announced on November 20th, 2017 that the European Medicines Agency (EMA) will relocate to Amsterdam. This agency plays a crucial role in the development and authorization of orphan medicines in Europe. Orphan medicines are medicinal products intended for the diagnosis, prevention or treatment of rare diseases. Wishing them …
Eurordis has launched the network of Parliamentary Advocates for Rare Diseases. This network of European and national Members of Parliament will advocate in the goal of improving the lives of people living with a rare disease by encouraging cross-border EU collaboration and ensuring that rare diseases are made a fundamental …
More than 80 participants gathered during the VASCERN days 2017, our 1st 2 days Annual Seminar, which took place in Paris on October 13 & 14, 2017. A big thank you to all our participants & speakers! Our Healthcare Providers Members were represented by 1 or 2 representatives, as well as 12 Patient Organisations, …
The VASCERN coordination team is very happy to announce that we now have an official Facebook page! As planned in our 1st year Action Plan (WP 10 on Communication), this Facebook page will share all of the latest news, achievements and events from our network as well as highlight the work and dedication of our …
The availability of conferences on YouTube via the VASCERN YouTube Channel is part of our first year action plan (Work Package 7). Our objective is to share content about: VASCERN The ERNs Scientific content on Rare vascular diseases Conferences given by VASCERN Members on our area of expertise Pills of …
‘Health in the digital society’ conference, Tallinn, 17 October 2017 Message from Vytenis Andriukaitis, European Commissioner for Health and Food Safety “The public consultation drew nearly 1500 replies and showed a broad support for health related actions in the Digital Single Market. More than 90% of respondents agree that citizens …
Rare Barometer Voice is a EURORDIS initiative. “Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys and studies. EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations. EURORDIS represents the …
Read the Report from RD-Connect of the Rare Diseases Registries Summer School, which took place in Rome in September. VASCERN was represented by our ePAG Representative, Christina Grabowski (Morbus Osler, Germany). As indicated by RD-Action: “The event promoted the establishment of Findable, Accessible, Interoperable, and Reusable (FAIR) rare disease registries …
Output of the RD-Action workshop on Data Standardisation, co-hosted by the European Commission (DG Sante) (April 2017) RD-Action Report on Recommended Practices for Data Standardisation in the Context of the operation of European Reference Network Read the report here