The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) held its 1st face to face meeting in the framework of VASCERN’s 3rd year of activities on the 8th of March, 2019 at Hammersmith Hospital in London, UK. It was hosted by Professor Claire Shovlin, Chair of the HHT-WG, and was attended by …
The European Commission launched a new online knowledge-sharing platform, called the European Platform on Rare Diseases Registration -EU RD Platform, for the occasion of Rare Disease Day on February 28th, 2019. The aim of this platform is to make data from rare disease registries searchable at an EU level and …
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 …
Vytenis Andriukaitis, the European Commissioner for Health and Food Safety, released an article on Rare Disease Day 2019, which coincides with the two year anniversary of the European Reference Networks (ERNs). In this message he talks about Onni, the five year old boy from Finland with a rare form of …
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). …
