Research News: A collaborative publication on surveillance and monitoring in vascular Ehlers-Danlos syndrome from the Medium Sized Arteries WG

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…

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EJ-PRD Bring Your Own Omics Data workshop

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…

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Exchange Program Interview: Dr. Ruben Hermann

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…

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Innovation Management Toolbox (IMT)

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/

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Rare Diseases Research Initiatives State of Play 2019-2021 Report

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…

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