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A U.N. Resolution for Rare Disease Patients

The international rare disease community is joining together to request a statement from the United Nations that would recognize the needs of patients around the world.


The United Nations holds a special place on the world stage and regularly focuses attention on the issues of global concern. That’s why the international community of rare disease patients and their families want to see the U.N. adopt a resolution in support of people who live with rare conditions.

“We want persons living with rare diseases and their families to be recognized as a vulnerable population,” EURORDIS CEO Yann Le Cam said in a YouTube video announcing the initiative.

A resolution would help promote policies of inclusion and participation, and the human right to health, education, work and leisure, Le Cam said. It would make a difference because it would be a catalyst for action at global, national and local levels, he said.

“We know that around the world the first issue faced by persons living with rare disease is actually their invisibility and lack of recognition, the lack of understanding about their condition,” said Le Cam, who is also a Rare Diseases International Council Member.

A vote is expected in New York when the U.N. Assembly gathers in September or October, Le Cam said. Both EURORDIS and Rare Diseases International are offering downloadable campaign assets to promote the cause.

Visit the #Resolution4Rare toolkit