VASCERN Spotlights: Alessandro Pini

This month we had the chance to interview Dr. Alessandro Pini, a cardiologist from Milan, Italy. Dr. Pini is Chair of VASCERN’s eHealth Working Group as well as the Heritable Thoracic Aortic Diseases (HTAD) and Medium-sized Arteries (MSA) Working Groups. Read about how Dr. Pini became involved in VASCERN, his…

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A look back at Rare Disease Day 2019

For Rare Disease Day 2019, members of the VASCERN team in Paris once again joined the French Rare Disease Networks (including members of FAVA-multi), Patient Associations, The Rare Disease Expertise Platform in the South of Paris and ERN-LUNG for the annual Rare Disease Day events in Paris. This year’s theme was…

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New collaborative HHT-WG publication on prevention of serious infections in HHT

A new collaborative publication entitled Prevention of serious infections in hereditary hemorrhagic telangiectasia: roles for prophylactic antibiotics, the pulmonary capillaries- but not vaccination has just been published in the scientific journal Haematologica. It is co-authored by Prof. Claire Shovlin (HHT-WG Chair), Dr. Kathleen Bamford, Prof. Carlo Sabbà, Dr. Hans-Jurgen Mager,…

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PPL-WG Face to Face Meeting in Leuven

The VASCERN Pediatric and Primary Lymphedema Working Group (PPL-WG) held their face to face meeting from February 21-22nd, 2019 at the University Hospitals Leuven (UZ Leuven) in Belgium. This meeting was the last Face to Face meeting under our 2nd year of EU co-funding for the ERN (March 2018-February 2019).…

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Give blood for the #myHHTvalentine campaign!

Started by the patient organisation HHT Onlus in Italy 5 years ago, the #myHHTvalentine campaign is back this year with the aim to raise awareness for Hereditary Haemorrhagic Telangiectasia (HHT) by encouraging blood donations from February 1st until Valentine’s Day (February 14th). HHT is an inherited disease of the blood…

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