The NGO Committee for Rare Diseases is dedicated to bringing greater political recognition and understanding about rare diseases at the global level. The committee acts as an advocacy platform, bringing together a diversity of stakeholders such as international NGOs, UN agencies, national governments, the academic and scientific world and the private sector for the benefit of those people living with a rare disease. In particular, it aims to bring visibility about rare diseases to the United Nations and to integrate them in its agencies’ operations and advocacy agenda as part of the Sustainable Development Goals.


The NGO Committee for Rare Diseases was launched in November 2016 at the United Nations Headquarters in New York, establishing its Founding Act.






Download Report from the inauguration of the NGO COMMITTEE FOR RARE DISEASES