Research News: 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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Research News: New collaborative publication from HHT-WG on safety of thalidomide and bevacizumab

A new collaborative publication by the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) entitled Safety of thalidomide and bevacizumab in patients with hereditary hemorrhagic telangiectasia has been published in the Orphanet Journal of Rare Diseases. It is co-authored by Prof Elisabetta Buscarini (HHT-WG Deputy Co-Chair), Dr. Luisa Maria Botella, Prof. Urban…

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VASCERN Spotlights: Lise Murphy

VASCERN Spotlights: Lise Murphy “What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates…

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VASCERN App officially launched!

We are happy to announce that VASCERN App, the free mobile application for IOS & Android created by VASCERN, is now officially launched and available for download at both the Play Store and Apple store.   Download the VASCERN App for Android at the Google Store here Download the VASCERN…

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Research News: New collaborative HTAD-WG publication

A new collaborative research paper entitled SMAD3 pathogenic variants: risk for thoracic aortic disease and associated complications from the Montalcino Aortic Consortium has just been published in the Journal of Medical Genetics.  It is co-authored by members of the VASCERN Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) including Prof. Julie De Backer (Chair…

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New Video Presenting VASCERN released!

We are very excited to finally share our brand new 5-minute video with you entitled How can VASCERN help you? Link to the video here This video presents VASCERN, its members and the work that our network does to improve the lives of patients with rare vascular diseases. It is…

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