VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
A new scientific publication by Dr Sophie Dupuis-Girod, HHT-WG Co-chair and Dr Claire Shovlin, HHT-WG Chair, has been published:
The Lung in Hereditary Hemorrhagic Telangiectasia by Sophie Dupuis-Girod, Vincent Cottin, C.L. Shovlin
Respiration 2017;94:315-330 (DOI:10.1159/000479632) has been chosen to be the free access article (Editor’s Choice) of Vol. 94, No. 4, 2017.
For free access go to www.karger.com/res (it will be available in the next few days)
The conclusion is :
“HHT is an important condition for the practicing pulmonologist. Where formalized regional or national screening/treatment programs are instituted, the life expectancy is increased when compared to historical controls and similar countries operating less well-implemented screening programs. The recent approval of the European Reference Network (VASCERN HHT; https://vascern.eu/expertise/rare-diseases-wgs/hht-wg/ ) is likely to improve visibility, transborder care, training, educational opportunities, and hopefully research for clinicians seeking greater insight into this important and long-overlooked condition.”