Rare Genes Movement

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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

You might not have Dr. House on speed dial, but if you’ve ever spent years searching for answers, you’re not alone. 💙
1 in 10 people live with a rare disease — proof that “rare” doesn’t mean “invisible.&rdqu

💙 Over 70% of rare diseases begin in childhood. Behind every number is a child, a family, and a journey most of us will never see.⠀
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Help us make the invisible visible: share this post, raise awareness, and stand with the rare community. ✨⠀
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💛 International WSS Awareness Day is personal to us at Rare Genes Movement.

Our journey began when our co-founder’s son was finally diagnosed with Wiedemann–Steiner Syndrome after years of searching for answers. That diagnosis brought c