EJP RD’s innovative Rare Diseases Research (RDR) Challenges call in partnership with Fondation Maladies Rare aims at facilitating and funding collaboration between industry, academia, SMEs, and patient organisations to solve specific research challenges in rare diseases. The first challenge issued under the RDR call was for the development of a non-invasive tool for measuring rare disease…
The Ehlers-Danlos Society is organising the International Scientific Symposium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes will be discussed. This hybrid event will take place in Rome, Italy (Fontana di Trevi Conference Centre)…
In October 2021, the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) announced a pilot project to support the repurposing of medicines. To support not-for-profit organisations and academia ahead of the upcoming deadline for submission (February 28th), the EMA is hosting a « walk-in » clinic webinar on February 17th from 17.00 – 18.00 CET. The webinar will:…
The Dravet Syndrome Foundation Spain (FSD), a non-profit organisation that promotes, encourages, and connects the world’s leading research centers for Dravet syndrome and related diseases, is announcing its upcoming conferences taking place in 2022, whose registration is now open at www.dravetconference.com. These in-person events will take place in Madrid, Spain over three days from March 31st – April 2nd. 1. Dravet Syndrome…
Organized by the Rare Skin Diseases Network of the René Touraine Foundation, in association with ERN SKIN, the 1st World Congress on Rare Skin Diseases is an event that brings together the best experts, patient representatives and industry around the same cause: improving the care of patients with rare skin diseases. This in-person event will take place…
Euronews has gathered a panel of experts, industry leaders and key players in Brussels to address the issue of how rare disease provision can be advanced in the European Union (EU) in a virtual debate entitled « Innovation in rare diseases: How can Europe be a global leader?« The virtual debate will take place on February 15th from 15.00 – 16.30…
International Rare Diseases Research Consortium (IRDiRC) member Dr. Anneliene Jonker, Vice Chair of the Therapies Scientific Committee (TSC) of IRDiRC, has been interviewed extensively for an article published in the February 2022 issue of Medical Technology magazine. The article, titled “Medical devices for rare diseases: the unmet need”, presents the goals of the IRDiRC Working Group on MedTech for Rare Diseases, the…
EU-STANDS4PM, a European standardization framework for data integration and data-driven in silico models for personalised medicine, has published a review article on computational models for clinical applications in the Journal of Personalized Medicine. In the article, the authors discuss the most relevant computational models for personalised medicine in detail that can be considered as best-practice…
The European Joint Programme on Rare Diseases (EJP RD) is proud to announce that EJP RD member Prof. Franz Schaefer has been conferred the EURORDIS Scientific Award for his work and the positive impact he has made on rare disease research and the patient community. The EURORDIS Scientific Award, which forms part of the annual Black Pearl Awards, recognises…
As part of the training activities proposed by EJP RD, an online training course on « Training on strategies to foster solutions of undiagnosed rare disease cases » is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The online event will take place over three days from on April 11th – 13th. Through…