We are following up once again with some exciting news. After several sessions of intense discussion, debates, and negotiations, the Member States of the World Health Organisation Executive Board made a decision to recommend the adoption of the World Health Assembly Resolution on Rare Diseases to the 78th WHA in May! The discussion was resumed once Member States made a decision on the financing issue. You can read RDI’s full statement following this result here.
A Significant Milestone for Rare Diseases
This marks a crucial achievement for the rare disease community. With 26 total cosponsors now and 224 organisations part of this coalition, it is evident that momentum is growing, and rare diseases are on their way to becoming a true global health priority. FH Europe Foundation is proud to be part of this coalition, working alongside global partners to push for meaningful change and improved care for those living with rare diseases.
What’s Next?
While this is an important step forward, there is still work to do! The Executive Board has recommended the adoption of the Resolution to the World Health Assembly in May 2025, but it is not yet officially adopted. We must continue to build momentum and support to ensure the successful adoption and implementation of the Resolution at the 78th WHA in May, where all Member States will vote on its adoption.
In the run-up to the WHA, we urge Member States to enhance and maintain their commitment and collaboration to secure the adoption and implementation of the WHA Resolution on Rare Diseases and the Global Action Plan. You can join this call by sharing our posts on social media and making sure that the voices of People Living With a Rare Disease (PLWRD) are heard.
How You Can Stay Engaged
If you missed the Executive Board meeting but would like to watch the discussion and decisions, you can rewatch the Executive Board meeting sessions via this link. The WHA Resolution on Rare Diseases was discussed during Sessions 4, 5, and 18 under agenda item 6 (UHC).
We will follow up soon with our next steps leading up to the WHA and how the coalition can continue to support this initiative. In the meantime, thank you all once again for your dedication and support—this is a win for all of us.
Coalition Update
We also want to share our updated coalition logo with you. It is incredible to see how much this movement has grown and how many voices have united to advocate for rare diseases on the global stage.
Let’s continue pushing forward together! As part of our request, we'd love for you to share any updates you come across and tag us or forward them to us directly. The more eyes and ears, the easier it is for us to stay informed and keep track!
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