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…
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…
A new review article entitled New and Emerging Targeted Therapies for Vascular Malformations has just been published in the American Journal of Clinical Dermatology. It is co-authored by Vascular Anomalies Working Group (VASCA WG) Chairs Professors Miikka Vikkula and Laurence Boon along with members of their Healthcare Provider (HCP) at…
Like all of our Rare Disease Working Groups, the Medium-Sized Arteries Working Group (MSA WG) had to hold their spring face-to-face meeting online. Hosted by MSA WG Chair, Dr. Leema Robert, it took place on the afternoon of Thursday June 25th, 2020 and was attended by 7 healthcare professionals from…
A rare disease registry codebook has been created thanks to a joint effort by researchers from Radboudumc and Amsterdam UMC (VASCERN Healthcare Providers (HCPs)). Access the codebook here EJP RD is designing templates for FAIR registries. The Vascular Anomalies (VASCA) registry for patients with vascular malformations, jointly designed by Radboudumc, LUMC…
We are very excited to announce that we have partnered with The Marfan Foundation to co-lead the upcoming E3 International Summit: Educating, Empowering, and Enriching Our Community. This three-week online program will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world…
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…
The Pediatric and Primary Lymphedema Working Group (PPL WG) face-to-face meeting was scheduled in Helsinki but due to COVID-19, it had to be cancelled and was held online from June 4th to 5th, 2020. This virtual meeting was chaired by Dr. Robert Damstra and attended by 14 healthcare professionals from…
The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) held a virtual meeting on the morning of June 12th, 2020. Originally scheduled as a face to face meeting in Lyon, France, the group had to change their plans, due to COVID-19, and held the meeting online. Chaired by Dr. Sophie Dupuis-Girod…
A new article entitled Update and audit of the St George’s classification algorithm of primary lymphatic anomalies: a clinical and molecular approach to diagnosis has just been published in the Journal of Medical Genetics. Five of the authors are members of the Pediatric and Primary Lymphedema Working Group (PPL WG), including…
