Rare Diseases International represents the global rare disease patient voice and plays a key role in the following initiatives:
The NGO Committee for Rare Diseases aims to promote multi-stakeholder collaboration and actions for rare diseases within the United Nations system. The Committee together with RDI and EURORDIS lead an international campaign calling for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families.
International Rare Diseases Research Consortium (IRDiRC) promotes international collaboration and advances rare disease research worldwide. RDI is part of IRDiRC’s Consortium Assembly and participates in the Patient Advocates Constituent Committee.
The Global Commission is a multi-disciplinary group developing recommendations and actionable pilots to end the diagnostic odyssey and improve the lives of children and families across the globe. RDI is a member of the Policy & Advocacy Working Group and Patient Empowerment & Awareness Working Group of the Global Commission.