World Health Assembly Unanimously Adopts Landmark Resolution Elevating Rare Diseases as a Global Health Priority

GENEVA – May 24, 2025 – In a historic decision, the Seventy-eighth World Health Assembly (WHA78) today unanimously voted to adopt the resolution “Rare diseases: a global health priority for equity and inclusion.” This marks the first time the World Health Organization (WHO) has formally placed rare diseases at the forefront of its global health agenda.

The resolution urges governments worldwide to integrate rare disease policies into national health plans, expand newborn screening and timely diagnosis, and ensure affordable access to essential medicines and assistive technologies under universal health coverage. It also promotes investment in digital tools, patient registries, and centers of excellence, while emphasizing the active participation of patient organizations in policy design.

Member States acknowledged the staggering impact of rare diseases, affecting over 300 million people globally with more than 7,000 distinct conditions. Seventy percent of these conditions manifest in childhood, often leading to delayed diagnoses, fragmented care, and substantial social and financial burdens for patients and their families.

A central provision of the resolution mandates WHO to draft a comprehensive 10-year global action plan by 2028. This plan will include measurable targets and an accountability framework, mapping existing standards, identifying technological innovations (including AI-enabled diagnostics), and outlining mechanisms for cross-border data sharing. This unprecedented mandate is expected to reshape research pipelines and regulatory pathways worldwide.

Policy analysts view this resolution as a significant catalyst for fresh momentum in cross-disciplinary research consortia and public-private partnerships. It aligns closely with the #Resolution4Rare campaign spearheaded by Rare Diseases International, which advocates for coordinated global action to address the 95% treatment gap and accelerate clinical trials for ultra-rare conditions.

“This vote transforms hope into hard policy,” said Dr. Daria Julkowska, Coordinator of ERDERA. “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.”

In the coming months, WHO will convene Member-State consultations and expert working groups to develop the action plan. ERDERA plans to contribute evidence from its pan-European data platforms and advocate for dedicated research funding within the EU Health Programme.

About the World Health Assembly– The World Health Assembly is the decision-making body of the World Health Organization (WHO). It is attended by delegations from all WHO Member States and determines the policies of the Organization, supervises financial policies, and reviews and approves the proposed programme budget.