The European Joint Programme on Rare Diseases, alongside TRANSCAN and the Innovative Health Initiative were selected by ERA LEARN to investigate how partnerships navigate the process of translating research activities into medical and health innovations for the benefit of patients, the European health systems and society. The report is available here. The aim of this…
IRDiRC is delighted to share the release of Connecting the dots: Embedding progress on rare disease into healthcare, an Economist Impact report sponsored by Takeda, a company that is part of IRDiRC’s Companies Constituent Committee. The report, to which IRDiRC members Takeya Adachi, Gareth Baynam and Hugh Dawkins contribute as an expert panel, takes a…
The Dravet Syndrome Foundation Spain works to improve the quality of life of people with Dravet syndrome and their families. The foundation recently released its end-of-year 2021 Dravet Syndrome Therapeutic Pipeline Report. In this report, the Foundation undertook a comprehensive review of the approved and investigational drugs and therapies for Dravet syndrome. The report also…
The recently released report of the 2021 European Research and Innovation Days organised in June 2021 by the European Commission presents the main conclusion from the 21,000 participants and 200 high-level speakers: The report contains summaries and quotes from the event’s 70 online live sessions and workshops, as well as from over 200 consultations between…
Last March, the World Duchenne Organization in collaboration with Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing for Duchenne. During this meeting, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare. Click here to read the full report In order to improve care…