EURORDIS has published a position paper on patient access to rare disease therapies entitled “Breaking the Access Deadlock to Leave No One Behind”. Due to major scientific advances and a favourable legislative environment, there has been a dramatic increase in the number of rare disease therapies developed in the last …
Eurordis’ Rare Barometer Voices has a new survey entitled “Sharing my health information: why, how, and with whom?” that aims to collect the thoughts of patients (and/or their family members/carers) on the topics of data protection and data sharing. With the increased number of initiatives requesting access to patient data to support …
We are proud to report that a new publication by our HHT-WG Chair Prof Claire Shovlin, the British Thoracic Society Clinical Statement on Pulmonary Arteriovenous Malformations, is now available. Pulmonary arteriovenous malformations (PAVMs) are abnormal blood vessels that connect pulmonary arteries directly to pulmonary veins, creating an anatomic right-to-left shunt, …
The much anticipated Clinical Patient Management System (CPMS) was released by the European Commission (DG SANTE) on Monday, November 20th, 2017 at 12:00 CET! This secure web-based application will be the platform where healthcare professionals from the European Reference Networks (ERNs) discuss real patient cases. The first few months will …
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
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 …
