The recording of the VASCERN webinar Diagnostic and Management Pathway for Venous Malformations, which took place on on Thursday January 20th, 2022 is now available. This informative webinar was presented by Professor Laurence BOON, plastic and reconstructive surgeon from Cliniques universitaires Saint-Luc, in Brussels, Belgium. It included a presentation of the pathway with each …
We are very pleased to officially welcome 13 new Healthcare Provider (HCP) full members who have joined VASCERN as of January 1st, 2022! These new HCPs first answered the 2019 call for membership to the existing European Reference Networks (ERNs) in November 2019 and the evaluation process, which has been …
A new article entitled The European Rare Disease Network for HHT Frameworks for management of hereditary haemorrhagic telangiectasia in general and speciality care has just been published in the VASCERN Special Issue of the European Journal of Medical Genetics. It is co-authored by members of the Hereditary Haemorrhagic Telangiectasia (HHT) working group. …
The VASCERN webinar Diagnostic and Management Pathway for Lymphatic Malformations took place on on Wednesday December 15th. This informative webinar was presented by Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in Stockholm, Sweden, and included an overview of the various types of lymphatic malformations followed by the presentation of the pathway …
The United Nations (UN) General Assembly adopted the first Resolution on Persons Living with a Rare Disease and their families by consensus on December 16th, 2021! It was supported by all 193 Member States of the UN. This is excellent news for Persons Living with a Rare Disease (PLWRD) and their Families …
The 10th International Conference of the International Lymphoedema Framework (ILF) took place from the 18 – 20 November 2021 in Copenhagen, Denmark. We are happy to report that both the patient advocates as well as healthcare professionals from the Pediatric and Primary Lymphedema Working Group (PPL WG) were largely represented at this international event! More than …
The VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas took place on November 23rd, 2021. This informative webinar was presented by Dr. Andrea Diociaiuti, Vascular Anomalies Working Group (VASCA WG) member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy. It started with a detailed …
Due to the COVID-19 pandemic, and the resulting travel restrictions, the ERN Exchange Programme has had a little difficulty in picking up speed, despite the many exchange proposals that have been planned and pre-approved for our network. The ERN Exchange Programme is designed to share knowledge and stimulate collaboration between …
Do you have a photo that captures life with a rare disease that you would like to share with the world? Submissions for the EURORDIS Photo Award are now open! This is an opportunity to visually express what it means to live with a rare disease and at the same …
A new Pill of Knowledge (PoK) video by the Pediatric and Primary Lymphedema Working Group (PPL WG) has just been released on our Youtube channel! It is entitled Genetic Testing for primary lymphedema – a mother’s perspective and features Carina Mainka, ePAG patient advocate for the PPL WG and representative …
