A new video has been released by the 23 French National Rare Disease Networks (FSMR – Filières Santé Maladies Rares) that explains why they were created by the French Ministry of Health, their structure, their missions and how they interact with the European Reference Networks on Rare Diseases. The video…
VASCERN is pleased to support the 3 a week campaign that has been launched by the patient advocates and healthcare professionals of the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG). This initiative aims to inspire people with Marfan syndrome and related HTAD to participate in a suitable form of physical…
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…
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…
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,…
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).…
We are happy to announce that the Orphanet entry on Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Encyclopedia for Professionals has been updated by the VASCERN HHT-WG and is now online. You can find the updated text here The writing was a true collaborative effort by the HHT-WG who dedicated…
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…
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…
