Rare Disease UK Survey

Rare disease UK has created a survey for rare disease patients and their families. The goal is to gather valuable information about the emotional impact of living with a rare disease in order to improve the support offered to patients and their families in the future. Link to the survey here

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HHT ePAG Meeting

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…

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European Medicines Agency (EMA) in Amsterdam

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…

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Parliamentary Advocates for Rare Diseases

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…

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VASCERN is now on Facebook!

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…

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VASCERN YouTube Channel is launched

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…

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