Upcoming Events



Past Events

Rare Disease Day 2017

Rare Disease Day 2017, the 10th edition of the day, took place on 28 February in over 90 countries all around the world, raising more widespread awareness than ever before! #RareDiseaseDay trended in more than 10 countries, including the US and the UK, and #DiaMundialEnfermedadesRaras even trended worldwide!

With the theme of research, and the slogan, ‘With research, the possibilities are limitless’, #RareDiseaseDay 2017 called on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.

The Rare Disease Day video, translated into over 30 languages, has now been viewed hundreds of thousands of times around the world. Share the video to become part of the international campaign!​


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)