WHO Adopts Resolution for Rare Disease Global Framework

⁢ Updated May 28, 2025
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The World‍ Health Assembly (WHA) voted Saturday to establish ​a global framework supporting the diagnosis, management, and research of rare diseases.Spearheaded by Egypt and ⁣Spain, with backing from over ⁢20 ⁣nations, the resolution marks a decade ⁤of advocacy ​by the rare disease community.

Hanan ‌Al Kuwari,advisor to Qatar’s Prime ⁣Minister‌ for Public Health Affairs,emphasized the resolution as a⁤ “practical step forward” that addresses existing gaps through stronger coordination.

While most rare diseases are genetic, they⁤ also include autoimmune, metabolic, and infectious ⁢diseases, as well as cancers. Individually⁤ uncommon, collectively thes diseases affect ‍approximately 300 million ⁢people worldwide.

The resolution addresses the⁢ challenges these uncommon cases pose ⁣to health systems, including lengthy diagnosis times and difficulties in accessing treatment due to limited expertise and expensive drugs. These issues are‍ magnified in countries with fewer healthcare resources. The global framework for rare‌ diseases aims to alleviate these disparities.

The World⁣ Health Organization (WHO) is tasked with⁢ creating a 10-year global action plan to promote equitable access to diagnosis and treatment, while also supporting research and ​monitoring efforts. The plan also calls for identifying centers of excellence for clinical work on⁣ rare disease groups.⁤ A draft of ⁤the action plan is expected for consideration in three years.

mohamed Hassany, Egypt’s assistant minister of health, stated that the global ⁣action plan will⁣ provide structure and momentum to a⁢ cause that has long ‍been fragmented⁢ and underfunded.

“The global action plan will give⁣ structure, coherence, and momentum to a ⁢cause that, for⁢ too long, has been fragmented and underfunded,” said Mohamed Hassany,​ MD, Egypt’s assistant minister of health for projects and public health initiatives, at the WHA side event.

Claudia ⁢Gonzaga-Jauregui, a geneticist at the National Autonomous ‌University of Mexico, called the resolution a‌ “huge and important step forward” ⁤for‌ recognizing rare ​diseases as a major public health need. She noted that proper implementation will require advocacy, legislative changes, and the development of national health plans.

Virginie​ Bros-Facer, CEO of EURORDIS-Rare ‍Diseases Europe, hailed the resolution as a⁣ historic moment, signaling that the health and inclusion ⁢of 300 million people ⁣living with a rare disease are now global priorities. She added that addressing rare diseases is essential ‌for achieving⁣ global health coverage.

“It sends a powerful and meaningful signal to policymakers the world over that the health and inclusion of ⁤the 300 million people living with a rare disease are now recognized ​as global priorities. The resolution ⁤reinforces the understanding ⁣that addressing rare diseases is essential to achieving universal health coverage and to building ⁣equitable,⁢ people-centered health systems,” virginie Bros-Facer, ⁤CEO of ‍EURORDIS, told Medscape ⁢Medical News.

what’s​ next

The ⁣WHO’s 10-year action plan is expected to foster important advancements in⁣ rare⁢ disease diagnosis, treatment, ⁣and ‍research, ultimately‍ benefiting healthcare systems globally.