UN Resolution on Persons Living with a Rare Disease

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.”

Recognizing the need to promote and protect the human rights of all persons, including the estimated 300 million Persons Living with a Rare Disease worldwide

UN Resolution on PLWRD, 2021

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.

Groundbreaking resolution

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

Press Release from the civil society partners – Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS – Rare Diseases Europe.

THE IMPACT

vISIBILITY

Puts a spotlight on Persons Living with a Rare Disease and rare diseases, often invisible to society, policymakers and health systems.

recognition

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.

international collaboration

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.

“The UN Resolution illustrates the power of the global community. Together, we are a powerful and inspirational voice.

Anders Olauson, Chair of the NGO Committee for Rare Diseases

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.

“Recognizing the fundamental importance of equity, social justice and social protection mechanisms as well as the elimination of the root causes of discrimination”

UN Resolution on PLWRD, 2021

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

KEY RESOURCES

Special thanks to:
The Phari Fund