From rarity to recognition: A brighter future for rare disease patients
From rarity to recognition: A brighter future for rare disease patients
2 months ago
cgtn.com
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rare fish with disability | Ate Laila
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Genetic and Rare Diseases Information Center
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genome.gov
Goshi is diagnosed with spinal muscular atrophy and spent his first five years living at an orphanage. Katrina, who is also diagnosed with SMA, saw Goshi’s adoption portfolio and knew instantly that she had found her son. Now Katrina is using her experience of living with a rare disability to help guide Goshi through life. | Special Books by Special Kids
11:44
Goshi is diagnosed with spinal muscular atrophy and spent his first five years living at an orphanage. Katrina, who is also diagnosed with SMA, saw Goshi’s adoption portfolio and knew instantly that she had found her son. Now Katrina is using her experience of living with a rare disability to help guide Goshi through life. | Special Books by Special Kids
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FacebookSpecial Books by Special Kids
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Living with disabilities isn’t a story of limits — it’s a story of reality, resilience, and unanswered questions about the future. For many families, disability also means living with rare conditions, often misunderstood, underfunded, and overlooked. Rare Disease Day 2026 is a reminder that behind every diagnosis is a person, a family, and a future that deserves support, awareness, and action. From accessing the right care and education to being heard and included, these challenges don’t disappe
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Today is Rare Disease Day! While I don’t like calling SMA or any other disability a disease, I love celebrating the rare part! In a world where they try to make us all the same, or try to say we’re weird if we don’t follow all the latest trends. I’m proud to be rare! SMA made me who I am. If I didn’t have my rare disability, there’s no telling how my life would have turned out. It might have been an easier life, but all my trials, sicknesses, hard times, and good times were all God's plan to mol
251 views2 months ago
TikTokcamochick202
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Rare Disease Day 💜🦋 Today, for us, it’s about Rett Syndrome. A rare genetic neurological disorder caused by a mutation on the MECP2 gene. It takes words, hand use, mobility — and replaces them with seizures, breathing struggles, and complex medical needs. It’s unpredictable. It’s lifelong. It’s invisible to many. Rare doesn’t mean small. It means underfunded, misunderstood, and often unseen. Hope is rare. And so is her strength. 💜🦋 #RareDiseaseDay #RettSyndrome #MECP2 #RareButStrong
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