Resolution for People Living with a Rare Disease adopted by the United Nations

A global grassroots campaign led by people living with a rare disease and their families has successfully secured the adoption of the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”

A UN resolution provides visibility for the rare disease community on the global policy landscape, as well as an assurance that rare diseases will be among the UN priorities within its 2030 Agenda. It is a key step towards a brighter future for people living with a rare disease.

The resolution was the outcome of tireless advocacy from civil society partners, including the NGO Committee for Rare Diseases, Rare Diseases International (RDI), EURORDIS – Rare Diseases Europe, and national rare disease groups from over 100 countries.

“This UN Resolution within the 2030 Agenda and its SDGs is a supportive global framework to encourage regional policy and action. In the European Union, it should translate into a Europe’s Action Plan for Rare Diseases,” said EURORDIS-Rare Diseases Europe’s Chief Executive Officer, Yann Le Cam.

Anders Olauson, Chair of the NGO Committee, stated: “The UNGA Resolution illustrates the power of the global community. Individually, rare diseases are rare, but together people living with a rare disease constitute a significant community deserving of UN support and recognition. Together, we are a powerful and inspirational voice.”

This success has demonstrated the power of coming together as a community of people living with a rare disease, their families, friends, and carers all around the world. By standing together in solidarity and action, we can show the world the strength of our global voice.

This is why we say: ‘Rare is many. Rare is strong. Rare is proud!’

This landmark resolution is yet another step towards eliminating barriers for people living with a rare disease and achieving equity in health, social care, education, and work.

To learn more about advocating for equity for people living with a rare disease, download our Equity Toolkit.

Have you been inspired by the incredible advocacy work that led to this UN resolution? Get involved in Rare Disease Day 2022 to join the global movement and campaign for the rights of people living with a rare disease.

Find out more about the UN resolution

Read the EURORDIS press release