NGO Committee for Rare Diseases (United Nations, New York)

Conference of NGOs with Consultative Status to the United Nations Economic and Social Council

True to its mission to advocate for rare diseases as an international public health priority, Rare Diseases International will represent the global rare disease patient community on board the new NGO Committee for Rare Diseases, established under the umbrella of the Conference of NGOs with Consultative Status to the United Nations Economic and Social Council (CoNGO).

CONGO’s vision is to be the primary support and platform for a civil society represented by a global community of informed, empowered and committed NGOs that fully participate with the UN in decision-making and programs leading to a better world, a world of economic and social justice.

The purpose of the NGO Committee for Rare Diseases will be to serve as an advocacy platform uniting around the issue of rare diseases a diversity of constituents which need to be more closely connected and collaborating with each other, including: the international NGO community, major UN agencies, national governments, the academic and scientific world as well as the private sector.

The NGO Committee for Rare Diseases shall endeavour to improve the visibility and understanding of rare diseases within the United Nations system and at the global level, but also to help extend the current body of knowledge about the spread and impact of rare diseases across the world. It will also help to open up new avenues for cooperation with international NGOs in other fields with which connections with rare diseases can be identified – e.g. disability, children’s rights, to name but a few.

The creation of the NGO Committee for Rare Diseases was approved by a vote of CoNGO member organisations in April 2014. Its inception meeting as a Substantive NGO Committee within CoNGO took place in October 2015 in New York.

The Committee was formally inaugurated on November 11 2016 at the United Nations headquarters in New York. See the report here


Committee for Rare Diseases inception meeting
From left to right: Cyril Ritchie, President of CoNGO, Yann Le Cam, Chief Executive Officer of EURORDIS and Anders Olauson, Chairman of AGRENSKA at Committee for Rare Diseases inception meeting at the UN in New York, October 20, 2015



The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases