NGO Committee for Rare Diseases

True to its mission to advocate for rare diseases as an international public health priority, Rare Diseases International (RDI) represents the global rare disease patient community on the boardof the NGO Committee for Rare Diseases, established under the umbrella of the Conference of NGOs in Consultative Status with the United Nations (CoNGO).

History

The NGO Committee for Rare Diseases was initiated by the Ågrenska Foundation and EURORDIS-Rare Diseases Europe, with a view to bringing greater political recognition to the challenges of rare diseases at the global level, and in particular, within the United Nations system. Its formation was approved by a vote of CoNGO member organisations in April 2014 and its inception meeting as a Substantive Committee within CoNGO took place in October 2015. In cooperation with RDI, the formal inauguration of the Committee took place on 11 November 2016 at the UN headquarters in New York (Report available here).

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

Rare Diseases International was a co-organiser of the 2nd High Level Event of the NGO Committee for Rare Diseases which took place on 21 February 2019 at the UN Headquarters in New York. The meeting took the form of an all-day roundtable bringing together around 100 participants from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector. More information on this event can be found here.


Mission

The NGO Committee for Rare Diseases aims to:

  • increase visibility of rare diseases at the global level, and in particular, within the UN system
  • extend and share knowledge about rare diseases and their unmet needs within UN debates
  • connect actors interested in rare diseases within a global multi-stakeholder platform
  • align rare diseases as a global priority in public health, research and medical and social care policies within the United Nations 2030 Agenda for Sustainable Development and its motto to ‘Leave no one behind’


Joint RDI-NGO Committee for Rare Diseases Advocacy at the United Nations

RDI works with the NGO Committee for Rare Diseases to advocate for the rights of persons living with a rare disease in various United Nations platforms. Find out more about this 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

Rare Diseases International patient representatives in front of the United Nations Headquarters in New York for the 2nd High Level Event of the NGO Committee for Rare Diseases on 21 February 2019.