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The 78th World Health Assembly (WHA) has unanimously adopted a historic resolution declaring rare diseases a global health priority, marking the first time the World Health Organization (WHO) has elevated rare diseases to the top tier of its agenda. The resolution, passed on May 24, 2025, was co-sponsored by more than 40 countries, including Egypt, Spain, and India, and is the result of a decade of sustained advocacy by the rare disease community.
A Global Framework for Rare Disease Care
The newly adopted resolution tasks the WHO Director-General with developing a comprehensive 10-year global action plan to address the diagnosis, management, and research of rare diseases. This plan, to be presented at the 81st World Health Assembly in 2028, will set measurable targets and establish an accountability framework to ensure progress toward equity, inclusion, and improved access to care for the estimated 300 million people worldwide living with one of over 7,000 rare diseases.
Key elements of the resolution include:
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Integrating rare diseases into national health plans.
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Expanding newborn screening and accelerating timely diagnosis.
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Guaranteeing affordable access to medicines and assistive technologies under universal health coverage.
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Promoting investment in digital tools, patient registries, and centers of excellence.
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Encouraging active participation of patient organizations in policy design.
Addressing Global Disparities
Rare diseases, most of which are genetic and begin in childhood, often lead to significant physical, emotional, and financial hardship. Delayed diagnosis, fragmented care, and limited access to specialized treatments are common challenges, especially in low- and middle-income countries where healthcare resources are scarce. In Europe, for example, it takes an average of four years to diagnose a known rare disease, and existing treatments are often prohibitively expensive.
The resolution aims to close these gaps by fostering international collaboration, supporting research and innovation (including AI-enabled diagnostics), and mapping existing standards and best practices. It also seeks to reduce the current 95% treatment gap and scale up clinical trials for ultra-rare conditions.
Momentum for Change
Patient advocacy groups and health policy experts have welcomed the resolution as a “huge and important step forward” in recognizing rare diseases as a major public health need. However, they caution that meaningful change will require sustained advocacy, legislative reforms, and the development of national health plans tailored to the needs of those affected.
Dr. Daria Julkowska, Coordinator of ERDERA, emphasized the collaborative nature of the initiative:
“By tasking WHO with a decade-long roadmap, countries have acknowledged that no lab, clinic or registry can succeed in isolation. The resolution puts collaboration—across borders, disciplines and sectors—at the heart of delivering faster diagnoses and equitable therapies for people living with rare diseases.”
Next Steps
In the coming months, WHO will convene consultations with member states, experts, and patient organizations to draft the global action plan. Progress will be reviewed at future World Health Assemblies, with a final evaluation scheduled for 2030.
Disclaimer:
This article is based on information available as of May 28, 2025, and summarizes key points from official statements, policy documents, and news coverage of the 78th World Health Assembly’s resolution on rare diseases. For the most up-to-date and comprehensive details, please refer to the official World Health Organization communications and the full text of the resolution.
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