United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families


The global community of persons living with a rare disease, their families, and civil society organisations, with the support of UN member states, are calling for the adoption of the upcoming United Nations General Assembly (UNGA) Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” (Resolution on PLWRD). This campaign is being led at a global level by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS – Rare Diseases Europe.

Brief summary

  • The UNGA Resolution on PLWRD will be presented through the Third Committee, which commences in September 2021. Learn more about the UNGA Resolution process here.
  • As one of the 193 nation-states of the UN, Australia will have the opportunity to support the adoption of the UNGA Resolution on PLWRD.

Significance of a UNGA Resolution

A UNGA Resolution would bring visibility to PLWRD within the UN system as much as in its member states at a national level. It would act as a catalyst for actions and policies, both at the global and national level in countries around the world.

Key asks of the Resolution on PWLRD

The UNGA Resolution on PLWRD is made up of five key asks that are consistent with a range of existing initiatives, policies and declarations across different areas including:

  • Protection of human rights
  • Fight against stigma, discrimination, exclusion, and marginalisation
  • Disability
  • Vulnerability
  • Rights of children and rights of women
  • Universal Health Coverage
  • Agenda 2030, Sustainable Development Goals, the commitment to “Leave no one behind”
  • Social inclusion

Five key asks

  1. Human rights and inclusion: participation and inclusion of persons living with a rare disease and their families in society and respect of their human rights

  2. Appropriate care: improvement of health and social outcomes with the appropriate care and support within existing resources

  3. National strategies: promotion of national strategies and measures to leave no one behind

  4. Recognition in the UN system: integration and visibility of the rare diseases issue into UN agencies and programmes

  5. Monitor progress and implementation: regular reports by the UN Secretariat to monitor the implementation and progress on the status of PLWRD

Read about these key asks in more detail here.

Rare Voices Australia’s (RVA) advocacy for a UNGA Resolution on PWLRD

RVA has written a formal letter to the Hon Greg Hunt MP’s office to inform the Minister’s office about the upcoming UNGA Resolution on PWLDR. We have requested that Australia endorse the UNGA Resolution on PLWRD, in alignment with the Australian Government’s demonstrated commitment to rare diseases.

Additionally, RVA will be disseminating information in our monthly e-newsletter and across our social media channels to help spread the word about the UNGA Resolution on PWLDR.

How you can help

We welcome all stakeholders in the rare disease sector to help amplify this message by sharing RVA’s posts on social media and this article with your network.

You can also access this toolkit and download a range of assets to use in your advocacy.

Next steps

The aim is to the get the UNGA Resolution on PWLDR adopted by the 193 member states of the UN at the General Assembly in their session which commences in September 2021. The hope is that the adoption of this UN Resolution is achieved by October or November 2021.

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