Contact us   |  
News

Exciting news of the Seventy-eighth World Health Assembly (WHA78)!

2025-05-28
Exciting news of the Seventy-eighth World Health Assembly (WHA78)!

WHO elevates Rare Diseases to global health priority status with unanimous resolution

The Seventy-eighth World Health Assembly took place in Geneva, Switzerland, from 19 to 27 May 2025. The theme for this year's event was: 'One World for Health'.

Exciting news for the rare disease community: for the first time, the World Health Assembly unanimously adopted a resolution on 'Rare diseases: a global health priority for equity and inclusion'.

The text urges governments to integrate rare disease policies into national health plans, expand newborn screening and ensure timely diagnoses, and guarantee affordable access to medicines and assistive technologies as part of universal health coverage. It also promotes investment in digital tools, patient registries, and centres of excellence, and encourages the active participation of patient organisations in policy design.

"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.