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


The global community of persons living with a rare disease, led by RDI, EURORDIS and the NGO Committee for Rare Diseases, is calling for a UN Resolution that recognises the complex challenges faced by persons living with a rare disease, and promotes full participation and inclusion in society of all people.


Over 300 million people worldwide live with one of over 6 000 identified rare diseases. Rare diseases are often chronic, complex, heavily disabling and life threatening.

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

Challenges include integration and inclusion in education systems that are often ill-adapted, challenges accessing stable work, greater risk of financial hardship, difficulty accessing appropriate healthcare, as well as stigma and discrimination, and increased gender inequity (especially felt by women and mothers who are often primary caregivers, and experience greater stigmatisation).

The challenges 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 whole.

Sustainable Development Goals advanced by addressing the challenges of PLWRD and their families:

Goal 1. No Poverty, Goal 3. Good Heath and Wellbeing, Goal 4. Quality Education, Goal 5. Gender Equality, Goal 10. Reduced Inequalities.

Brazil, Spain and Qatar are the Core Group of UN Member States championing the adoption of the UN General Assembly Resolution in 2021. The group of supportive Member States is growing, and includes countries in Africa, Asia and Europe. We urge all 193 Member States of the UN General Assembly to join the call and adopt the UN Resolution this year.


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 claims and advocacy of the rare disease community at national level.
  • Encourage National Strategies and International Collaboration – If adopted, it would foster an enabling environment to stimulate the development of national strategies and international collaborations to address the complex challenges faced by PLWRD and their families

Key Asks for the UN Resolution:

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 join the call ?

#Resolution4Rare – Tools Page

Every voice matters ! Free, downloadable and updated communication and advocacy tools. Call for a UN Resolution in 2021.

Use the hashtag #Resolution4Rare and modify letter templates to reach out to national policy makers and UN Representatives.


“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 messages from the global rare disease community open the presentation on the call for a UN Resolution to Addressing the Challenges of Persons Living with Rare Diseases and their Families.

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.


Policy Event: Calling for a UN Resolution on the Challenges of Persons Living with a Rare Disease and their families, 4 March 2021