ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed under ERDERA’s predecessors, EJPRD and the […]
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IRDiRC is proud to announce the publication of the latest article in Therapeutic Advances in Rare Disease: “From Roadmap to a Sustainable End-to-End Individualized Therapy Pathway.” This publication builds on the […]
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IRDiRC has four Scientific Committees: Diagnostics, Therapies, Interdisciplinary, Regulatory. The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts working on rare disease (RD) data sharing, ontologies, natural history, biobanks, […]
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On the 25th of April, the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) gave givinostat (Duvyzat), a novel histone deacetylase (HDAC) inhibitor, a […]
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Commissioned by the French Ministry of Higher Education and Research, ANR (Agence nationale de la recherche) will launch a specific call for research projects on Charcot disease, also known as […]
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“Breaking down silos and fostering collaboration to help rare disease patients” – The World Orphan Drug Congress convenes top pharmaceutical and biotech companies, public and private funders, patient advocacy groups […]
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The European project ERDERA has opened a call to select patients with a rare disease to participate in a training course organized by TEDDY Network with the support of c4c-S, IMAGINE, […]
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IRDiRC is delighted to present the outcome of the collaboration between the European Federation of Pharmaceutical Industries and Associations (EFPIA), the Rare Disease Moonshot and the IRDiRC Companies Constituent Committee: […]
Read MoreWe are delighted to announce that IRDiRC Chair, Dr. David Pearce, will be speaking at the World Orphan Drug Congress USA this April, in Boston, MA, USA. The World Orphan […]
Read MoreWe are excited to announce the release of our latest scientific article: “Drug–device combinations in rare diseases: Challenges and opportunities” published in Drug Discovery Today, co-authored by members of Therapies & Interdisciplinary […]
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