Each month we aim to publish an article presenting a new collaborative scientific publication by our network. These articles, along with any other research-related pieces featured in our monthly newsletter, can now be accessed directly via a dedicated Research News page on our website. VASCERN aims to promote European cooperation …
The Vascular Anomales Working Group (VASCA WG)‘s first patient pathway, Severe/Rare Infantile Hemangioma, has now been translated into three new languages: We thank the Healthcare professionals from the VASCA WG for validating the translations of these pathways in their native languages. Additional languages should be added soon. The other Rare …
A new article has been published in ALS New Today that talks about the European Joint Programme on Rare Diseases (EJP RD), established in January 2019, with its coordinator Daria Julkowska. EJP-RD is an International consortium based in Paris, funded largely by the 28-member European Union, which intends to speed …
During the event « Equal access to care for rare diseases » organised by Friends of Europe (a leading Brussels-based think tank), that took place in Brussels on June 26, 2019, Eurordis’ CEO Yann Le Cam highlighted the success of the policies put in place to support people with rare diseases. He …
Following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU, The European Commission will launch in the coming weeks the first call for new Healthcare Providers (HCP) full members to join the existing 24 ERNs. The concrete date for the opening and closing of the …
A new article entitled RASA1 mosaic mutations in patients with capillary malformation-arteriovenous malformation has recently been published in the Journal of Medical Genetics. It is co-authored by members of the VASCERN Vascular Anomalies Working Group (VASCA WG) including Prof. Miikka Vikkula, Prof. Laurence Boon, Prof. Alan Irvine and Dr. Veronika …
The first ERN newsletter was published on July 3rd, 2019 and sent to the various members of the ERNs by the Directorate General Health and Food Safety. This newsletter, divided into three parts, provides an overview of the activities of the 24 ERNs. The three parts are: 1) Interviews with …
Bakoumba, a Marfan children’s book, is being translated from French (originally published by the French Marfan Association (MARFANS-Assomarfans) into various EU languages. MARFANS has generously covered the copyright costs for different EU languages for use of the book in print format in Europe and is working on the edition of the …
A new collaborative publication entitled Genetic counselling and testing in adults with congenital heart disease: A consensus document of the ESC Working Group of Grown-Up Congenital Heart Disease, the ESC Working Group on Aorta and Peripheral Vascular Disease and the European Society of Human Genetics has just been published in the European Journal of Preventive Cardiology. It is co-authored by members of the VASCERN Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) including Prof. Julie De Backer (Chair of HTAD-WG) and Prof. Guillaume Jondeau (Co-Chair of HTAD-WG), Prof. Bart …
After the nomination of the Pernille Henriksen last month as the European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL WG), it looks like the ePAG patient group for PPL is growing with the addition of Manuela Lourenço Marques, who will be ePAG Deputy …