Thanks to the Clinical Patient Management System (CPMS), members of the Vascular Anomalies (VASCA) Working Group have recently been able to discuss two guest patient cases from Portugal and Serbia (countries with no VASCERN Healthcare Provider (HCP) member) and offer valuable advice to the treating physicians in order to help these patients in …
In this edition of VASCERN Spotlights we interview Dr. Andrea Diociaiuti, a dermatologist from Italy and member of the Vascular Anomalies Working Group (VASCA WG). Dr. Diociaiuti shares what attracted him to the specialization of dermatology and vascular anomaly management, the challenges of working in the rare disease field and …
We are very happy to officially announce the launch of the updated version of our mobile app: VASCERN app version 2! In order to start using VASCERN app version 2, please uninstall and delete version 1 (or any test version) and then: Download the VASCERN App (Version 2) for Android …
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 …
