Research News: A collaborative publication on the use of intravenous bevacizumab in Hereditary Haemorrhagic Telangiectasia (HHT)

The Hereditary Hemorrhagic Telangiectasia Working Group (HHT-WG) has published an article titled European Reference Network for Rare Vascular Diseases (VASCERN): When and how to use intravenous bevacizumab in Hereditary Haemorrhagic Telangiectasia (HHT)? in the European Journal of Medical Genetics as part of the VASCERN Special Issue. It is co-authored by members, collaborating experts, and the ePAG…

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ERN Research Mobility Fellowship Funding

The European Joint Programme on Rare Diseases (EJP RD) is glad to announce that the last round for the Research Mobility Fellowships funding opportunity will open on October, 3rd, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their…

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ERN Research Training Workshop Funding

The ERN Research Training Workshops funding opportunity is now open for applications until October 1st. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation,…

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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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