The NGO Committee for Rare Diseases brings together knowledge and experts to promote rare diseases as a priority in global health, research and social and medical care


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     


Est. 350m

people globally


of genetic origin


affect children

Affect between
6-8% of the


rare diseases