On 16 December 2021, the UN adopted the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”
The ground-breaking Resolution was adopted by all 193 UN Member States and is the first UN document to recognise the specific challenges of Persons Living with a Rare Disease (PLWRD) and their families.
This milestone is the outcome of coordinated and robust advocacy from rare disease civil society groups worldwide led by Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS – Rare Diseases Europe.
Proposed by three UN Member States – Spain, Brazil, and Qatar – the text was co-sponsored by 54 countries (see the complete list of countries).
- The Resolution goes beyond health. It affirms that addressing the needs of Persons Living with a Rare Disease 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 the inclusion of Persons Living with a Rare Disease in society.
Press Release from the civil society partners – Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS – Rare Diseases Europe.
Puts a spotlight on Persons Living with a Rare Disease and rare diseases, often invisible to society, policymakers and health systems.
Recognises the challenges specific to living with a rare disease and the need for particular attention to be given to this vulnerable community. A form of “soft law” binding on the UN secretariat, as well as its budget and programmes, the Resolution enables greater recognition and integration of rare diseases in the agenda, actions and priorities of the UN.
empower the global community
Provides a powerful commitment at the international level to support rare disease groups advocating at the national level.
Promotes global initiatives addressing the complex challenges of Persons Living with a Rare Disease and encourages countries to foster networks and multi-disciplinary expert hubs to strengthen health systems for rare diseases.
the global goals
Recognises that addressing the needs of PLWRD advances the UN’s commitment to “leave no one behind” and contributes to the achievement of the Sustainable Development Goals.
Global Grassroots Advocacy
The campaign toward a UN Resolution mobilised national and international patient alliances, appealed to policymakers and UN representatives, and engaged all stakeholder groups and the public to urge the UN to adopt a resolution before the end of 2021.
TOOLKIT & resources
The global campaign continues. Help call on the UN and its Member States to keep their promise to Persons Living with a Rare Disease. Use the Resolution4Rare Toolkit.
Key Asks of the UN Resolution
INCLUSION AND participation iN SOCIETY of Persons Living with a Rare Disease & their families
universal and equitable access to quality health services without financial hardship
national strategies and actions for rare diseases
integrate RARE DISEASES INTO UN AGENCIES, PROGRAMMES AND PRIORITIES
Regular UN reports TO monitor progress on the implementation of the resolution
- Resolution4Rare Toolkit
- UN General Assembly Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families
- List of UN Resolution co-sponsors