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 …
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 …
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 …
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 …
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG) has issued the following consensus statement on the use of fluoroquinolones in patients with Heritable Thoracic Aortic Diseases (HTAD): “In patients with HTAD, Fluoroquinolones should be used with caution because of a possible risk for exacerbation of aortic disease. The use of alternatives …
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 …
The full conference report of the 4th conference on European Reference Networks (that took place November 21-22nd, 2018 in Brussels, Belgium) has been released by the European Commission. This comprehensive report outlines the main topics discussed during the 5 round table and 8 parallel sessions that took place during the two day …
The VASCERN Coordination team would like to wish you all a very happy, healthy and prosperous 2019! We look forward to the year ahead and achieving many more of our goals, which will improve the lives of patients with rare vascular diseases.
