The NGO Committee for Rare Diseases aims to promote multi-stakeholder collaboration and actions for rare diseases within the United Nations system.
It is established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO) and acts as a forum of interested parties such as NGOs from the field of rare diseases and beyond; United Nations bodies and agencies; as well as individual experts.




Est. 300m

people globally


of genetic origin


affect children

Affect between
6-8% of the


rare diseases


Rare Disease Day 2021 official video