We would like to congratulate Professor Miikka Vikkula, our Vascular Anomalies Working Group (VASCA-WG) Chair, for being awarded the first Generet Award, with a prize of €500,000 for research into rare diseases! The Generet Fund, managed by the King Baudouin Foundation, aims to support rare disease research by awarding an annual…
We are thrilled to announce the publication of European Reference Network for Rare Vascular Diseases (VASCERN) Outcome Measures For the Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Journal of Rare Diseases (OJRD). This Clinical Position Statement is based on the 5 Outcome Measures selected by members of the VASCERN HHT-WG.…
A new scientific publication entitled Clinical Validity of Genes for Heritable Thoracic Aortic Aneurysm and Dissection, co-authored by several VASCERN HCP representatives including Prof Julie De Backer (Chair of the HTAD-WG), Prof Catherine Boileau (HTAD-WG member), Dr Leema Robert (Chair of the MSA-WG) and Prof Bart Loeys (member of the HTAD and…
A new scientific paper entitled Expert consensus recommendations on the cardiogenetic care for patients with thoracic aortic disease and their first degree relatives has been published! This consensus statement is co-authored by several of our HTAD-WG members including Dr Marlies Kempers (Radboud university medical center), Bart Loeys (University Hospital of Antwerp),…
A new scientific publication on arterial tortuosity syndrome has been published online (advance online publication) in Genetics of Medicine. The publication, entitled Arterial tortuosity syndrome: 40 new families and literature review, is co-authored by several VASCERN HCP representatives including Prof Julie De Backer (Chair of the HTAD-WG), Dr Sophie Dupuis-Girod…
A new publication, co-authored by Prof Alessandro Pini (VASCERN eHealth and Training & Education Chair and HTAD-WG and MSA-WG member), entitled “Impaired Central Pulsatile Hemodynamics in Children and Adolescents With Marfan Syndrome” is now available. This study focuses on a cohort of children and adolescents with Marfan syndrome (MFS), a rare vascular…
We are proud to report that a new publication by our HHT-WG Chair Prof Claire Shovlin, the British Thoracic Society Clinical Statement on Pulmonary Arteriovenous Malformations, is now available. Pulmonary arteriovenous malformations (PAVMs) are abnormal blood vessels that connect pulmonary arteries directly to pulmonary veins, creating an anatomic right-to-left shunt,…
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.…
A novel blood vessel disorder and its genetic cause discovered Researchers in the group of Prof M. Vikkula of the de Duve Institute in close collaboration with the Vascular Anomalies Center (Prof Laurence Boon) and the Center for Human Genetics (Dr Nicole Revencu), both at Cliniques universitaires Saint-Luc, discovered a…
New collaborative publications have been published these last months by the Chairs of VASCERN Pediatric and Primary Lymphedema Working Group, Dr. Robert Damstra and Prof. Sahar Mansour and her HCP substitute representative, Prof Peter Mortiner: Circumferential suction-assisted lipectomy in the treatment of primary and secondary end-stage lymphoedema of the leg. Lamprou…
