As one of the joint undertakings under Horizon Europe, a draft Strategic Research & Innovation Agenda (SRIA) for the Innovative Health Initiative (IHI) has been published on the European Commission (EC) website. IHI will build on the […]
Read MoreThe European Expert Group on Orphan Drug Incentives (OD Expert Group), in collaboration with media partner EURACTIV, is organising a webinar on how to address the unmet needs of rare disease patients by transforming the European Orphan Medicinal Products […]
Read MoreIRDiRC has three Scientific Committees, one each for Diagnostics, Therapies and Interdisciplinary aspects of rare diseases research. The Therapies Scientific Committee (TSC) is a multi-stakeholder, multi-disciplinary group of experts in medical research […]
Read MoreDECIPHER, an IRDiRC-recognised resource and an associated partner of EJP RD, is organising a webinar to introduce DECIPHER, an online data-sharing platform facilitating the visualisation and contextualisation of rare disease genomic and […]
Read MoreThe UN Convention on the Rights of the Child and other Human rights instruments, recognising that children are rights-holders with a progressively evolving ability to make their own decisions, endorsed […]
Read MoreMedics4RareDiseases has launched its online, interactive e-learning platform dedicated to teaching medics the fundamentals of rare disease and help them manage both their undiagnosed and diagnosed patients. Sign up here […]
Read MoreHeritable human genome editing has been proposed as a means of helping parents avoid passing genetic diseases to future generations. But can heritable human genome editing be used safely? On […]
Read MoreThe Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Shared Molecular Etiologies Underlying Multiple Rare Diseases aiming to address and document the existing challenges in adapting the basket […]
Read MoreThe Diagnostics Scientific Committee (DSC) is establishing a Task Force on the Integration of New Technologies for the Diagnosis of Rare Diseases. This activity proposes to identify the most clinically […]
Read MoreWe are pleased to announce that FDA will be holding a virtual public meeting on Friday, March 5, 2021, from 9:00 a.m. to 4:00 p.m. EST to highlight strategies to support […]
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