At the 77th World Health Assembly (WHA) in Geneva, we stood at the heart of two defining moments for the global rare disease community: the first in-person gathering of the Youth Leadership Programme (YLP), and the historic adoption of a World Health Organization (WHO) resolution on rare diseases. Both events marked a new chapter in youth empowerment and international recognition of rare diseases as a public health priority.
One of the week’s most inspiring highlights was the inaugural in-person meeting of the Youth Leadership Programme, held during a WHA side event organized by Rare Diseases International (RDI) and supported by Fondation Ipsen.
Created by RDI and supported by Fondation Ipsen, the YLP is a pioneering initiative designed to empower young people affected by rare diseases. The initiative is designed to equip young advocates with tools to drive meaningful change through mentorship, capacity building, and opportunities to connect with international forums and networks.
After months of virtual collaboration, young rare disease advocates from around the world came together in Geneva to connect, share their experiences, and strengthen their collective voice. Their energy, commitment, and vision brought fresh momentum and hope to this historic week for the global rare disease community.
Complementing this dynamic youth engagement was another major milestone: the formal recognition of rare diseases as a global public health priority by the World Health Organization.
Adopted on May 31, 2025, the resolution urges Member States to integrate rare diseases into national health systems, strengthen access to diagnosis and care, and promote research and international cooperation. It represents a powerful lever for the development and consolidation of national policies.
This achievement is the result of several years of dedicated international advocacy, led by RDI with the active support of patient organizations, healthcare professionals, and committed partners such as Fondation Ipsen. Notably, Fondation had already supported RDI’s successful campaign for the United Nations General Assembly resolution on rare diseases in 2021.
Fondation Ipsen is proud to support this global movement and to contribute, through its actions, to advancing equity and social justice for people living with a rare disease.
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