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 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.
Proposed by three UN Member States – Spain, Brazil, and Qatar – the text was co-sponsored by 54 countries (see the complete list of countries).
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.
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.
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.
making the resolution
Implement NATIONAL MEASURES which address the disproportionate effect of poverty, discrimination, and lack of employment
Ensure the implementation of the 2030 AGENDA FOR SUSTAINABLE DEVELOPMENT is inclusive and accessible
Accelerate efforts towards the achievement of UNIVERSAL HEALTH COVERAGE for all persons, including PLWRD
Collect, analyse and disseminate DATA On PLWRD, disaggregated by income, sex, age, race, ethnicity and other characteristics
Promote access to full and productive EMPLOYMENT & decent work, along with appropriate measures for financial inclusion for PLWRD and their families
Consider the issue of PLWRD at the 78TH SESSION 12 of the United Nations in 2023
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.
TOOLKIT & resources
#ACT4RARE is a comprehensive toolkit for the global community to call for action on the commitments made by all UN Members States in the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”.
Press Release from the civil society partners – Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS – Rare Diseases Europe.
- #ACT4RARE 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