First-ever UN Resolution addresses the challenges of the 300 Million Persons Living with a Rare Disease

On December 16, 2021 the UN General Assembly formally adopted Resolution A/RES/76/132 recognising the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families. The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society. The global, landmark campaign for equity that achieved the Resolution was the outcome of coordinated and tireless advocacy led by civil society partners, including the NGO Committee for Rare Diseases, RDI, and EURORDIS, and engaged national rare disease groups active in over 100 countries.

  • The NGO Committee for Rare Diseases is a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). It aims to promote collaboration and actions for PLWRD within the UN.
  • Rare Diseases International (RDI) is the global alliance of PLWRD and their families. RDI is a network of 81 organisations representing groups active in over 100 countries worldwide.
  • EURORDIS-Rare Diseases Europe is the alliance of 984 rare disease patient organisations that work together to improve the lives of the 30 million PLWRD in Europe and beyond.
  • The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to improving the lives of individuals living with rare disease. NORD represents more than 300 rare disease patient advocacy groups and the 25-30 million Americans living with rare disease.
Scroll to Top