EU Health 2018 funding for ERNs & Rare Diseases

The European Commission has adopted the 2018 Annual Workplan for the 3rd EU Public Health Programme. EU Funding and calls linked to the European Reference Networks and Rare Diseases are the following: OrphaCodes, to support the implementation of OrphaCodes for rare diseases by Member States – EUR 750 000 (p. 16) Multiannual…

Continue reading

ISSVA 2018 International Workshop

The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended…

Continue reading

New Eurordis Rare Barometer Voices Survey

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…

Continue reading

Research News: HHT new scientific publication

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,…

Continue reading

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

Continue reading

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…

Continue reading