The first five-year evaluation of the ERNs and their HCP Full Members (members that are in the ERNs since 2017) is scheduled to start in September 2022 and finish by the end of August 2023. This evaluation will be part of the new Assessment, Monitoring, Evaluation and Quality Improvement System…
A new collaborative research paper titled Surveillance and monitoring in vascular Ehlers-Danlos syndrome in European Reference Network For Rare Vascular Diseases (VASCERN) was recently published in the European Journal of Medical Genetics as part of the VASCERN Special Issue. It is co-authored by members and affiliated partners of the VASCERN Medium Sized Arteries Working…
The Bring Your Own Omics Data (BYOOD) workshop (17th-18th November 2022) by EJ PRD is aiming to help you to optimize and integrate your omics data, initiate network analysis, and continue collaborations with the data analysis team. In order to help them further understand what your needs on data analysis are, and to adapt the workshop to them please complete…
In our first VASCERN Exchange Program interview, we are thrilled to interview Dr. Ruben Hermann from the CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant in Lyon, France. Dr. Ruben Hermann is a member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). In this article, he shares what were…
EJP RD is delighted to announce the launch on June 30th, 2022 of the Innovation Management Toolbox (IMT), a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs. The database will be maintained actively! Learn about the IMT: https://www.ejprarediseases.org/innovation-management-toolbox/Access the IMT: https://imt.ejprarediseases.org/
IRDiRC is pleased to announce that the IRDiRC‘s Rare Diseases Research Initiatives State of Play 2019-2021 Report will be published on Tuesday, 05 July 2022. This report is based on scientific articles and press releases published between 2019 and 2021; it seeks to inform stakeholders and the rare diseases community about the developments and observed trends in the field…
The webinar on “Composite endpoints including patient relevant endpoints (Quality of Life)” is now available here In this webinar you will learn about: The procedures to combine multiple endpoints and its limitations The properties and the flexibility of the class of generalized pairwise comparison tests The potential advantages and disadvantages…
The 70th Congress of the European Society of Cardiovascular and Endovascular Surgery (ESCVS) was held in Liège, Belgium, from 20 – 23 June 2022. Prof. Julie De BACKER (HTAD-WG Chair), Prof. Guillaume JONDEAU (HTAD-WG Co-Chair), Prof. Bart LOEYS, Dr. Ingrid VAN DE LAAR, Dr. Laura MUIÑO MOSQUERA, and Dr. Meike RYBCZYNSKI were among…
We are pleased to report that an article titled The VASCERN European Reference Network: An Overview, published in the European Journal of Medical Genetics is now open access. It is co-authored by Prof. Guillaume Jondeau (VASCERN Coordinator), Julie Hallac, Marine Hurard, Natasha Barr, Karen Daoud, and Ibrahim Donmez. VASCERN is…
The Neurovascular Diseases Working Group (NEUROVASC-WG) is a new rare disease working group formed in January 2022. The group had its first spring meeting in Paris and online on June 10th, 2022, chaired by Dr. Dominique Hervé (NEUROVASC-WG Chair) and Dr. Anna Bersano (NEUROVASC-WG Co-Chair). Six healthcare professionals, and invited patient organizations…
