UN Resolution on Rare Diseases

RDI is calling upon Member States of the UN General Assembly (UNGA) to collectively promote measures that are multidisciplinary, holistic and person-centred, and that ensure non-discrimination and opportunities to contribute to society for people living with a rare disease (PLWRD). 

The specific combination of vulnerability, inequality, and exclusion leads to the need for integrating rare disease strategies into the broader human rights’ agenda and the global sustainable development efforts of the UN.

The Sustainable Development Goals (SDGs) with their inclusive principle to “leave no one behind”, and the endeavour to reach the furthest behind first, demand a greater commitment to addressing the specific challenges encountered by PLWRD.

To achieve this RDI, together with the NGO Committee for Rare Diseases and EURORDIS, are asking for the adoption of a UNGA Resolution on PLWRD.

Key Asks for the UN Resolution on rare diseases would include:

1. Inclusion and participation of PLWRD & their families in society and respect of their human rights

2. Improvement of health and social outcomes with the appropriate care and support within existing resources

3. Promotion of national strategies and actions

4. Introduction of rare diseases into UN agencies and programmes

5. Regular reports by the UN Secretariat to monitor the progress on the implementation.

Rare Disease Day Policy Event at the United Nations, 11 February 2019:
NGO Committee for Rare Diseases calls for a UN resolution on rare