International advocacy improves the visibility of Persons Living with a Rare Disease (PLWRD) and families worldwide and advances rare diseases as an international policy priority.

Trudy and her family, Zimbabwe

RD represents the global rare disease community and our members at key international institutions, including the United Nations.

Working together with multiple civil society stakeholders, we call for equity for PLWRD and help shape international policy.

Advocacy Priority

Why Advocate at the Un?

  • Shape regional and international policies and actions that advance health and social equity
  • Elevate the voice of rare disease organisations and PLWRD around the globe
  • Promote international collaboration between countries and across stakeholders
  • Advance rare diseases in the UN System, Agenda 2030 and the Sustainable Development Goals
SDG1 - Poverty

RDI at the UN

RDI is on the Executive Board of the NGO Committee for Rare Diseases, a committee established under the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). As a committee under CoNGO, the NGO Committee participates in UN consultations and decision-making.

In 2021 the global rare disease community led by RDI, the NGO Committee for Rare Diseases, and EURORDIS achieved the adoption of the first-ever UN Resolution on “Adressing the Challenges of Persons Living with a Rare Disease and their Families.

In addition, RDI liaises with Permanent Missions and Special Rapporteurs in New York and Geneva and engages operationally with the WHO secretariat.