World Health Assembly adopts first-ever Resolution on rare diseases
On 24 May 2025, Member States of the World Health Assembly (WHA) voted to adopt the organisation’s first-ever Resolution on Rare Diseases, marking a major step forward for the global rare disease community. The Resolution calls on the WHO to develop a Global Action Plan on rare diseases, thereby engaging Member States in the reinforcement of healthcare for people living with a rare disease (PLWRD) at both the national and international levels.
This success follows the extensive #Resolution4Rare campaign led by Rare Diseases International (RDI), which called for the adoption of such a Resolution in order to prioritise rare diseases on the global health agenda, and ensure that the over 300 million PLWRD worldwide are not left behind in efforts to achieve universal healthcare. Speaking about the Resolution’s adoption, Kirsten Johnson, Chair of the RDI Council of Directors, said:
“The adoption of the Resolution on Rare Diseases at the 78th World Health Assembly marks a global turning point. It affirms that universal health coverage must include rare conditions and calls for a global action plan centred on access, treatment, and equity…The adoption of the Resolution is not the end – it is the beginning of a new chapter. We now look ahead to the development of a Global Action Plan that will guide concrete steps to ensure no one living with a rare condition is left behind.”
via Rare Diseases International (open in new tab to enlarge)
Behind RDI’s campaign was a coalition of over 280 members, representing the importance of broad, large-scale collaboration the affect real change for PLWRD around the world. While celebrating the adoption of the Resolution, Alexandra Heumber Perry, CEO of RDI, drew attention to this point:
“People living with a rare disease have long remained in the shadows – overlooked by health systems, underrepresented in national plans, and too often living without access to the care and support they need. But now, with the adoption of the WHA Resolution and the development of a Global Action Plan, we stand at a turning point. This change is not accidental – it is built on the strength of our communities, the unwavering commitment of over 280 civil society organizations, and global collaboration rooted in evidence and an unwavering desire for equity…They remind us that health equity is not achieved in isolation. It requires the voices, knowledge, and leadership of all of us – including those of us who have historically been left behind.”
Following the WHA vote, rare disease organisations around the world celebrated the decision to adopt the Resolution. Patient alliances such as Rare Diseases South Africa and Rare Disorders New Zealand released statements affirming their support of the Resolution, and expressing hopes that it would help advance their work to improve the lives of PLWRD at the national level.
Moving forward, the next step is for the WHO to convene Member State consultations and expert working groups to begin drafting a Global Action Plan for rare diseases. RDI is urging all Member States to dedicate the resources necessary to implement the provisions outlined in the Resolution at national, regional and international levels, notably through appropriate consultation with the rare disease community. Doing so, and continuing to draw attention to the specific challenges of PLWRD and their families, is the only way to ensure that this Resolution leads to real, tangible impact for the global rare disease community.
