The international rare disease research consortium (IRDiRC): making rare disease research efforts more efficient and collaborative around the world

Abstract

The International Rare Disease Research Consortium, or IRDiRC, is a global consortium of key stakeholders from different facets of rare disease research that together seek to drive advances in diagnostics, therapeutics, and patient outcomes. The consortium facilitates a global and cross-disciplinary exchange of ideas to tackle key issues in rare diseases through the development of recommendations, data standards, tools, and guidelines that harmonize research efforts and improve efficiency. While IRDiRC has made significant contributions to the development of new therapies and diagnostics since its establishment in 2011, much work remains to alleviate the burden of rare diseases. The consortium has demonstrated its success in providing a global platform to advance rare disease research through collaborative efforts worldwide and continues to identify and address barriers to health equity for all rare disease patients.

Keywords

Rare Disease / patient advocates / orphan drug / clinical research

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