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Annual Report

Download our 2021–2024 Annual Report (PDF)

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Annual Report




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info@raregenesmovement.org

Rare Genes Movement is a 501(c)(3) nonprofit organization. Contributions are tax-deductible to the fullest extent permitted by law.

EIN: 84-4654027

On The ‘Gram

Today is Parker’s birthday. And as we celebrate him, a local newspaper shared a piece of his story — a story that’s as much about joy as it is about challenges. Parker was born with a rare genetic disorder. It’s part of his j
🌟 RARE SPOTLIGHT 🌟 Today, we’re sharing the journey of a brave woman living with the PSEN1 mutation—an ultra-rare gene variant that causes early-onset familial Alzheimer’s. 🧬 Fewer than 1 in a million carry this mutation 🧬 Symp
We may have missed the official day, but honoring rare stories never goes out of date. 💚⁠ ⁠ Yesterday was Fragile X Awareness Day — a day dedicated to raising awareness for the most common inherited cause of intellectual disability and autism
✨ Inclusion just got a little brighter in Point Pleasant! Today, the amazing girls of Troop #60929 officially installed a communication board at Heritage Park—a tool to help nonverbal or speech-delayed children express themselves. This Bronze
Why do stories matter? Because one story can change everything. When rare families share their journeys, it’s not just about the diagnosis. It’s about hope. Education. Community. It’s about making someone else feel seen—mayb
🇺🇸 Happy Fourth of July weekend from Rare Genes Movement! 🎆 This weekend, as we celebrate freedom, unity, and resilience, we honor all the incredible families navigating the journey of rare genetic disorders. 💙💫 Just as our nation was built on