Upcoming Events

Rare Disease Day

The next edition of Rare Disease Day will be celebrated on Tuesday 28 February 2017. Please mark your calendars. Further information to be made available in due course.


Past Events

Global Gathering for Rare Diseases:

Inaugurating the NGO Committee for Rare Diseases

The inauguration of the NGO Committee for Rare Diseases took place on 11 November at the United Nations Headquarters in New York.

Watch the video of the event — More information

Speakers’ presentations

This event took place under the patronage of:

Queen Silvia of Sweden


The Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)

With the support of:

– The Swedish Ministry of Health and Social Affairs

– The Permanent Mission of Estonia to the UN

– The Government of the Republic of Malta

Programme                        Speakers at a Glance                Founding Act                             Report

thumbnail-programme-front-cover  final-front-page-speakers    

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)
  • 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)