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,…

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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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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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