24 May 2025, Geneva Switzerland

The Seventy-eighth World Health Assembly (WHA78) adopted a landmark resolution to formally recognise rare diseases as a global health priority. The resolution aims to improve equity and inclusion for more than 300 million people living with one of over 7000 distinct rare conditions, 70% of which begin in childhood.

People living with a rare disease, along with their families and caregivers, frequently experience discrimination, social isolation, and financial hardship, often compounded by delayed diagnosis and limited access to an appropriate treatment. These reasons highlight the importance of adopting a patient-centred approach and achieving universal health coverage, ensuring equal access to essential, high-quality health services for all.

The resolution urges the inclusion of rare diseases in national health plans, progress toward universal health coverage by 2030, and universal access to quality care, especially for children. It promotes digital technologies, patient organisations involvement in policy development, investment in research, patient registries and centres of excellence, and global cooperation for safe, effective, and affordable treatments.

Importantly, WHO has been entrusted by the resolution to draft a comprehensive 10-year global action plan on rare diseases by 2028, with measurable targets, to drive progress on equity, inclusion, and access to care. The plan will also identify current standards and technological innovations (such as artificial intelligence solutions), establish a dedicated workstream on universal health coverage for people with rare diseases and identify global centres of excellence to serve as hubs for clinical collaboration, knowledge exchange, and cross-border medical support.

This resolution represents a significant step toward ensuring that no one is left behind, marking a new era in the global response to rare diseases.

The full text of the resolution is available here: EB 156/6