IRDiRC members Lucia Monaco (Consortium Assembly Chair), Daria Julkowska, Durhane Wong-Rieger, Gareth Baynam, Samuel Agyei Wiafe, Anne Pariser, and Ritu Jain will be discussing IRDiRC at a global scale during the upcoming two-day online workshop entitled “Covering Rare Diseases” to be held on September 13th and 14th and organised by the National Press Foundation. Registration […]
Read MoreIRDiRC has recently accepted a new Recognized Resource, the Cellosaurus, a knowledge resource on cell lines aiming to describe all cell lines used in biomedical research. The Cellosaurus provides information for about 130,000 cell lines and 25% of these cell lines are established from rare disease patients. For each cell line the Cellosaurus provides a […]
Read MoreIRDiRC has recently accepted a new Recognized Resource, the Cellosaurus, a knowledge resource on cell lines aiming to describe all cell lines used in biomedical research. The Cellosaurus provides information for about 130,000 cell lines and 25% of these cell lines are established from rare disease patients. For each cell line the Cellosaurus provides a […]
Read MoreThe United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled
Read MoreThe United Nations Political Forum on Sustainable Development (HLPF) is co-organising a High-Level Side Event titled “On the road towards COVID-19 recovery & delivery of the Sustainable Development Goals – Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority” along with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS. The fully online event will […]
Read MoreAs one of the joint undertakings under
Read MoreAs 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 successes of and lessons learnt from the Innovative Medicines Initiative (IMI). The goal of IHI is to help create an EU-wide health research and innovation ecosystem that facilitates the translation of […]
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 (OMP) landscape. Dr Lucia Monaco, Chair of the IRDiRC Consortium Assembly, will participate as an expert presenter. The webinar will take place on June 11th from 14.30
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 (OMP) landscape. Dr Lucia Monaco, Chair of the IRDiRC Consortium Assembly, will participate as an expert presenter. The webinar will take place on June 11th from 14.30 – 16.00 CET. […]
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 and therapy development in rare diseases. Specifically, the TSC is devoted to pursuing the therapeutic development of IRDiRC, supporting the rare diseases research community in […]
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