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 …
After last year’s online VASCERN Days, it was with great pleasure that we were able to welcome our members and invited stakeholders to VASCERN Days 2021 once again in Paris this year! This was one of the first face-to-face meetings for many of our participants since the COVID-19 pandemic started …
A new collaborative review paper on Primary Lymphedema has just been published in Nature Reviews Disease Primers and is co-authored by Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG Chair) and Professor Miikka Vikkula (Vascular Anomalies (VASCA) WG Chair). Find the article here Access the “Prime View” illustration graphic here From basic science to a clinical description …
A new publication entitled Efficacy of Sirolimus in Patients Requiring Tracheostomy for Life-Threatening Lymphatic Malformation of the Head and Neck: A Report From the European Reference Network has just been published in Frontiers in Pediatrics. It is co-authored by members of the Vascular Anomalies Working Group (VASCA WG) and presents …
The Heritable Thoracic Aortic Working Group (HTAD WG) have just released a new series of Do’s and Don’ts factsheets on Loeys-Dietz syndrome! Download them here This series of 21 new factsheets deals with the specific Do’s and Don’ts for patients with Loeys-Dietz syndrome facing common situations including pregnancy, stroke, colonoscopy, physical …