Global Gathering for Rare Diseases

Watch the video of the event

This Global Gathering represented the first time that rare diseases receive proper consideration as a global public health priority for action within the United Nations, as part of the 2030 Sustainable Development Agenda and Goals. The inauguration of the NGO Committee for Rare Diseases took place on 11 November 2016 at the United Nations Headquarters in New York.

This special event brought together knowledge, experts and also testimonials from affected individuals on the ground to promote greater recognition of rare diseases as a priority in global health, research and medical care. You may consult the official Programme for an outline on the speakers and topics discussed and the Presentations page for detailed information on the day’s proceedings and access to every speaker’s slides.

Statements of Support for the NGO Committee for Rare Diseases

  • Baroness Jane Campbell – Independent Member of the UK House of Lords
  • Philippe Douste-Blazy – Under-Secretary-General of the UN, Special Adviser on Innovative Financing for Development in the United Nations, chairman of UNITAID and Former French Minister of Health (1993-1995 and 2004-2005)
  • Miklós Szócska – Former Minister of State for Health of Hungary, Director of the Health Services Management Training Centre of the Budapest Semmelweis University
  • Françoise Grossetête – Member of the European Parliament and Vice-Chair of the Group of the European People’s Party
  • President Tarja Halonen – Former President of Finland and Co-Chair of the WHO-OHCHR High Level Working Group for the Health and Human Rights of Women, Children and Adolescents
  • Dainius Puras – United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health
  • Federico Mayor Zaragoza – President of the Foundation Culture of Peace and Former Director-General of UNESCO (1987 – 1999)