The NGO Committee for Rare Diseases was launched 11 November 2016 at the United Nations Headquarters in New York. Click on the links to watch the inaugural ceremony, part 1 and part 2.
ICORD was presented during the meeting. Read the meeting summary and speech by John Forman, ICORD Past-President.
The major organisational efforts to set up the committee have come from the Ågrenska Foundation and EURORDIS. The NGO Committee for Rare Diseases is established under the umbrella of the Conference of NGOs with Consultative Status to the United Nations Economic and Social Council (CoNGO).
CoNGO’s purpose is to support and be a platform for the civil society by representing a global community of NGOs in order to facilitate the ability of NGOs to influence policies and actions at all levels of the United Nations.
The objective of NGO Committee for Rare Diseases will be to serve as an advocacy platform for rare diseases, increasing awareness and understanding of rare diseases within the UN and worldwide as well as stimulating collaboration among different stakeholders, including the international NGO community, major UN agencies, national governments, the academic and scientific world and the private sector.