Who we are

The International Rare Diseases Research Consortium (IRDiRC) is a global collaborative initiative launched in 2011 by the European Commission and the US National Institutes of Health to tackle rare diseases through research and accomplish the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention.

Today, the Consortium gathers 60 member organizations from all continents. Members’ representatives are organized into the Constituent Committees of Funders, Companies and Umbrella Patient Advocacy Groups, and collaborate with international experts nominated into the Diagnostics, Therapies, Interdisciplinary and Regulatory Scientific Committees.

Through its broad representation, IRDiRC works towards the mission of advancing diagnostics and treatments, and of understanding the impact of these, for all people living with a rare disease.

IRDiRC Committees are engaged to identify gaps and key issues in rare disease research and to tackle these through Task Forces and Working Groups aimed at producing guidelines, recommendations and resources.