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, […]
Read More
At the 78th World Health Assembly, World Health Organisation Member States have officially adopted the first-ever Resolution on Rare Diseases — a landmark step toward greater equity and recognition for […]
Read More
IRDiRC was represented at the International Conference of China by Dr. David Pearce, IRDiRC Chair, and Dr. Gareth Baynam (Interdisciplinary Scientific Committee Chair). The meeting was organized by CHARD, and […]
Read MoreThe IRDiRC Funding Models for Rare Diseases Research Toolbox is designed to support patient advocacy organizations in gaining a clearer understanding of the roles, objectives, and funding strategies employed by […]
Read More
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 […]
Read More
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 […]
Read More
“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 […]
Read More
The French National Research Agency (ANR) announces the launch of the “Choose France for Science platform” — operated by ANR on behalf of the French government, as part of France 2030. As the international […]
Read More
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, […]
Read More
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 More