A Historic Win for the Rare Disease Community: Equity and Inclusion at the Global Level
On May 24, 2025, something monumental happened for the global rare disease community—and for all of us affected by conditions like Superficial Siderosis. At the 78th World Health Assembly in Geneva, the first-ever resolution on rare diseases was officially adopted, declaring rare diseases a global health priority.
That means the world’s top health leaders have finally said, loud and clear: People living with rare diseases deserve to be seen, heard, and cared for—equally.
What is the World Health Assembly?
Think of the World Health Assembly (WHA) as the decision-making hub of the World Health Organization (WHO). Every year, representatives from countries all over the globe come together in Geneva to set the course for international health policy. It’s where big-picture decisions are made—ones that affect how countries fund care, what conditions are prioritized, and which issues make it onto the global health agenda.
This year, for the very first time, rare diseases were front and center.
So, What Does This Mean? (The Resolution)
Over 300 million people worldwide live with one of the 7,000+ rare diseases—many of which, like Superficial Siderosis, are poorly understood, hard to diagnose, and often ignored in national health plans. This resolution changes that. Here's what it includes:
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A call for countries to include rare diseases in national health policies
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A commitment from WHO to develop a 10-year global action plan focused on access, equity, and inclusion
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Measurable goals to track real progress—so we’re not just making promises, we’re making change
You can read the official document here if you’re curious: WHO Rare Disease Resolution
Where Does Superficial Siderosis Fit In?
We know that Superficial Siderosis (SS) is an incredibly rare and misunderstood condition. The good news? It is listed in the ICD-11—the international system doctors use to code and classify diseases. SS is coded as 8E42. This inclusion helps raise visibility, improve tracking, and potentially unlock research and care pathways.
To explore more rare diseases in ICD-11, check out the ICD-11 Browser
Why This Matters for Our Community
This resolution doesn't magically fix the challenges we face—but it's a huge step in the right direction. For those of us living with SS, this could mean more awareness, more research, and better care options in the future.
At The Silent Bleed, we’re committed to making sure SS has a seat at the table. We’re continuing our work alongside leading neurologists like Dr. Werring and Dr. Levy to ensure SS is recognized, studied, and treated with the urgency it deserves.
Stay Informed, Stay Involved
This moment belongs to all of us. Whether you live with SS or another rare condition, this resolution marks a global acknowledgment that we matter. In the meantime, keep advocating, keep sharing your story, and keep following The Silent Bleed for updates.
Together, we’re changing the narrative—one step at a time.