Historic step in the world of rare diseases: WHO adopts first resolution
On May 24, 2025, the World Health Assembly (WHA) Member States adopted for the first time in history a resolution dedicated to rare diseases. This is official recognition of the problems of more than 300 million people living with rare or undiagnosed diseases at the highest international level.
Resolution:
- emphasizes the need for systemic solutions
- calls for the development of a 10-year Global Action Plan under the auspices of the WHO Director-General
- focuses on ensuring access to diagnosis, treatment, care and protection from discrimination.
The document is based on an understanding of the pressing challenges:
- on average it takes 4-6 years to get a diagnosis,
- 95% of rare diseases have no approved treatment,
- millions of patients do not receive an accurate diagnosis even after genetic testing,
- families face catastrophic costs and social isolation.
The resolution was initiated by Egypt and Spain, with the support of a broad international coalition of 275 organizations, including Rare Diseases International, EURORDIS and associations from all regions of the world.
The CIS Orphan Consortium welcomes this important step and expresses its readiness to facilitate the implementation of the resolution at the level of CIS countries. Ahead is the work on national plans, diagnostic programs and a sustainable system of patient care,
— Nuriya Musina, Executive Director of the CIS Orphan Consortium.
Full text of the announcement of the adoption of the resolution
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