A new NGO Committee for Rare Diseases has been established under the umbrella of the Conference of NGOs with Conference of NGOs with Consultative Status to the United Nations Economic and Social Council (CoNGO).
The mission of CoNGO is to facilitate the participation of NGOs in the United Nations system. 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 endeavor 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 NGO Committee for Rare Diseases was initiated in 2014 by the Agrenska Foundation of Sweden, which helped secure a vote of CoNGO member organizations in favor of the creation of the Committee. The Agrenska Foundation was then joined by EURORDIS-Rare Diseases Europe for the Committee’s “inception” meeting as a Substantive NGO Committee within CoNGO, which took place in October 2015 in New York.
The formal inauguration of the Committee is currently scheduled for Tuesday 8 November 2016 at an all-day event at the United Nations headquarters in New York.