UN Resolution on Persons Living with a Rare Disease and their Families


The global community of persons living with a rare disease is calling for a UN Resolution that recognises the challenges faced by persons living with a rare disease and promotes full participation and inclusion in society of all people.


Resolution Adopted by UN Third Committee

On 15 November 2021, the UN Resolution on “Addressing the challenges of persons living with a rare disease and their families” was unanimously adopted by the Third Committee of the UN.

The text recognises the over 300 million persons living with a rare disease (PLWRD), their families and loved ones and calls for action from the countries of the United Nations.

UN Third Committee Adopts UN Resolution - click

The next step is the formal adoption of the Resolution by the UN General Assembly at its next session in December 2021.

So far, the Resolution has been co-sponsored by 54 countries. We are urging all UN Member States to co-sponsor the text in recognition and support of our community.

Resolution Co-sponsors


Challenges of PLWRD and the United Nations

Persons living with a rare disease (PLWRD) and their families face inequity and challenges that touch on every aspect of life.

The experiences of this global community are tied to the aims of the Sustainable Development Goal (SDGs), beyond healthcare, and demand the attention of the United Nations as a whole.

Around the globe, our community decries social exclusion and discrimination driven by a lack of public knowledge and understanding of the challenges of PLWRD.

Inequities begin early in life. Children and parents struggle to be included and integrated into education systems that are often unaware of their specific challenges and not adapted to meet their needs.

Finding, retaining and returning to work when living with a rare disease is a constant challenge.

Families have a greater risk of impoverishment as they juggle the added costs associated with care for a rare disease, and are often pulled away from the workplace to care for a member of the family living with a rare disease.

PLWRD face difficulties accessing the appropriate health care and social support.

Woman experience barriers accessing care and greater stigma as PLWRD, and often become the primary caregivers in the family.


Why a UN Resolution ?

  • Elevate Rare Diseases Within the UN System – A General Assembly Resolution is a form of “soft law” binding on the UN secretariat, as well as the budget and programmes of the United Nations. The Resolution would be the basis for further integration of rare diseases in the agenda, actions and priorities of the UN.
  • Advance the Achievement of Agenda2030 and the SDGs – The rare disease community is a vulnerable group facing challenges linked to the key pillars of the SDGs. Addressing the needs of this community advances the commitment to “leave no one behind”.
  • Empower the Global Rare Disease Community – The Resolution would be a point of reference and an additional basis at international level to support the advocacy of the rare disease community at national level.
  • Encourage National Strategies and International Collaboration – The teext will stimulate the development of national strategies and international collaborations to address the complex challenges faced by PLWRD and their families

The Key Asks:

1. INCLUSION AND PARTICIPATION IN SOCIETY OF PLWRD & THEIR FAMILIES


2. IMPROVEMENT OF HEALTH AND SOCIAL OUTCOMES WITH THE APPROPRIATE CARE AND SUPPORT WITHIN EXISTING RESOURCES



3. PROMOTION OF NATIONAL STRATEGIES AND ACTIONS


4. INTERGRATION OF RARE DISEASES INTO UN AGENCIES, PROGRAMMES AND PRIORITIES


5. REGULAR REPORTS BY THE UN SECRETARIAT TO MONITOR PROGRESS ON IMPLEMENTATION.


How can you support the campaign ?

#Resolution4Rare – Toolkit

Every voice matters! Call for all UN Members States to co-sponsor the UN Resolution in 2021. Free, downloadable and updated communication and advocacy tools.


“Dear UN”

What would you like the countries of the United Nations and governments around the world to know about life with a rare disease? Write your message to the United Nations and help policies makers understand the reality of living with a rare disease and the challenges, hopes and aspirations of our global community.


International Events

UN Regional Group Meetings – A Resolution on Persons Living with a Rare Disease and their Families, 7-9 September 2021

A message from the global rare disease community on the call for a UN Resolution

00:00 Testimonies: Persons Living with a Rare Disease and their Families

8:53 Civil Society Partners and facts about rare diseases

10:31 Why a UN Resolution on Persons Living with a Rare Disease

22:49 Call to Action


Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF), 7 July 2021

On the road towards COVID-19 recovery and delivery of the SDGs: “Addressing the challenges of persons living with a rare disease as a sustainable development, human rights, and equity priority”.

Organized on the margins of the HLPF, the side-event was co-hosted by Brazil, Spain and Qatar – the Core Group of Member States promoting the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families – together with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS.