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The United Nations Recognizes Rare Disease Patients

Supporters hope a newly adopted U.N. resolution will make rare disease patients more visible and ensure they have access to care.

Three smiling children celebrate the passage of a UN resolution for rare disease patients under the headline "We did it."

All 193 member states of the United Nations have adopted a resolution that recognizes the plight of people around the world who live with rare diseases and conditions – a milestone patient advocates hope will inspire meaningful changes.

EURORDIS-Rare Diseases Europe, Rare Diseases International and the Rare Disease Committee for Rare Diseases led the effort that included a grass-roots campaign. They jointly announced the success in December and said this first-ever U.N. resolution represented a major shift in the global policy landscape, promising greater integration of rare diseases in the agenda and priorities of the U.N. system.

“In the European Union, it should translate into Europe’s Action Plan for Rare Diseases," said EURORDIS-Rare Diseases Europe’s Chief Executive Officer Yann Le Cam.

The resolution will help promote policies of inclusion and participation, and the human right to health, education, work and leisure, Le Cam has said. An estimated 300 million people live with 6,000 known rare diseases and conditions, many of which lack treatments.

“The consensus in support of the resolution sends a clear message that Leaving No One Behind is a priority for the U.N,” said Flaminia Macchia, Rare Diseases International Executive Director.