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 on Addressing the Challenges of Persons Living with a Rare Disease (PLWRD) and their Families in 2021.


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. Their impact is felt on multiple aspects of the lives of persons living with a rare disease and their families

PLWRD around the world confront a paucity of expertise and knowledge of rare diseases as well as a lack of public awareness, exposing the community to greater social, health and economic vulnerability.


RDI in partnership with EURORDIS and the NGO Committee for Rare Diseases, is a calling a UN Resolution that recognises the complex needs of persons living with a rare disease, and promotes the human rights and full participation in society of all people.


The specific combination of vulnerability, inequality, and exclusion experienced by persons living with a rare disease and their families make it necessary to integrate measures to address rare diseases in the broader human rights agenda.

In addition, a UN Resolution on PLWRD is essential to the realisation of the United Nations’ pledge to “leave no-one behind” as expressed in the Sustainable Development Goals 2030.


A growing group of UN Member States including Brazil, Spain and Qatar, are championing the call for the adoption of the UN General Assembly Resolution in 2021. We are calling on all 193 Member States of the UN General Assembly to join the call, and adopt the UN Resolution this year.


#Resolution4Rare – Tools Page

Every voice matters ! Free, downloadable and updated tools to support the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease (PLWRD) and their Families.

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


Key Asks for the UN Resolution:

1. Inclusion and participation of PLWRD & their families in society and respect of their human rights


2. Improvement of health and social outcomes with the appropriate care and support within existing resources


3. Promotion of national strategies and actions


4. Introduction of rare diseases into UN agencies and programmes


5. Regular reports by the UN Secretariat to monitor progress on the implementation.


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