First-ever United Nations Resolution adopted to Increase Visibility for Persons Living with a Rare Disease

The United Nations (UN) General Assembly adopted the first Resolution on Persons Living with a Rare Disease and their families by consensus on December 16th, 2021! It was supported by all 193 Member States of the UN.

This is excellent news for Persons Living with a Rare Disease (PLWRD) and their Families as it affirms that addressing the needs of PLWRD is essential to advancing the 2030 Agenda for Sustainable Development and recognises the specific challenges faced by the rare disease community.

Some of the key requests of the resolution include:

1. Inclusion and participation in society of persons living with a rare disease & their families

2. Ensure universal and equitable access to quality health services without financial hardship

3. Promote national strategies and actions

4. Intergrate rare diseases into UN agencies, programmes and priorities

5. Publish regular UN reports to monitor progress on the implementation of the resolution

Please read the official press release from Rare Diseases International, EURORDIS and the NGO Committee for Rare Disease (who together led an international campaign for the adoption of this Resolution) here