02/28/2026
International Rare Disease Day is here!🦓
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Alternating Hemiplegia of Childhood
Spreading awareness can lead us to a cure.
🦓International Rare Disease Day 🦓
Today is about raising awareness and raising each other up. It’s about connection. It’s about letting every family fighting a rare disease know that rare does not mean invisible.
We’ve all heard the saying, “When you hear hoofbeats, think horses, not zebras.” It’s meant to remind doctors to look for common explanations first. But for families like ours, the sound wasn’t horses. It was zebras.
When you first receive a rare diagnosis, it can feel isolating. Overwhelming. Like you’ve stepped into a world no one else understands. What you don’t realize in that moment is just how strong a herd of zebras can be.
The rare disease community is unlike anything you’ve ever experienced. It stretches far beyond a single diagnosis. It’s parents who become experts overnight. It’s scientists who dedicate their careers to solving what others overlook. It’s researchers who refuse to give up. It’s advocates who turn heartbreak into action. And it’s families who, despite exhaustion and fear, stand shoulder to shoulder.
