New Position Paper from the Hereditary Haemorrhagic Telangiectasia Working Group on Cerebral Screening in Adults and Children with HHT

A new position paper by the Hereditary Haemorrhagic Telangiectasia working group (HHT WG), entitled European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT), has recently been published in the Orphanet Journal of Rare Diseases. Abstract: “Hereditary haemorrhagic…

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Capillary, Venous and Lymphatic Malformation Patient Pathways now available!

Three new patient pathways have just been released by the Vascular Anomalies Working Group (VASCA-WG) and are now available online! Capillary Malformation Patient Pathway Venous Malformation Patient Pathway Lymphatic Malformation These pathways (along with the already published pathway on Severe/Rare Infantile Hemangioma) were first presented at the International Society for the Study…

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VASCERN Spotlights: Charissa Frank

This month it’s Charissa Frank, European Patient Advocate Group (ePAG) Deputy Co-Chair for the Medium-sized Arteries Working Group (MSA WG) from Belgium, who is in the VASCERN Spotlight! Charissa is a patient advocate for both VASCERN and ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal…

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