Adoption of the first UN Resolution on Persons Living with Rare Diseases
On 16 December 2021, the UN General Assembly adopted the Resolution on Persons Living with a Rare Disease and their families by consensus. The Resolution, proposed by Spain, Brazil, and Qatar and co-sponsored by 54 countries, was adopted with the support from all 193 UN Member States of the General Assembly, following its adoption by the UN Third Committee in November.
The Resolution aims at “Addressing the Challenges of Persons Living with a Rare Disease and their Families” and recognises the specific challenges faced by the rare disease community. By adopting this ground-breaking text, the UNGA places the rare disease community in the agenda and priorities of the UN while affirming that addressing the needs of PLWRD is essential to advancing the 2030 Agenda for Sustainable Development, which includes access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.
The Resolution focuses on the empowerment of the rare disease community and provides support to rare disease advocacy groups at the international level. It also recognises the importance of increasing equity, social justice and social protection mechanisms and eliminating of the root causes of discrimination for people living with rare diseases, while calling for the improvement of their health and social outcomes.
Another key outcome of the adoption of this resolution is the possibility of the UN Assembly to urge Member States to adopt national plans and strategies to address the challenges faced by rare disease patients and their families. The Resolution will also boost international collaborations in the field of rare diseases.
Rare Diseases International, EURORDIS and the NGO Committee for Rare Disease, which led an international campaign for the adoption of this Resolution, issued a common press release welcoming the news. Yann Le Cam, EURORDIS' Chief Executive Officer said "This UN Resolution within the 2030 Agenda and its SDGs is a supportive global framework to encourage regional policy and action. In the European Union, it should translate into a Europe’s Action Plan for Rare Diseases".
