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Family
Gatherings

“In isolation, change feels like a crisis. In community, change feels like a mission.” -Rare Road Foundation Co-Founder Marshal Armitage

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When a child is diagnosed with a rare disease, life changes instantly. It can be overwhelming and isolating.

But it doesn’t have to be.

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We bring families together to share experiences, build friendships, and find strength in one another, because community is as essential as care.

Upcoming Events

Rare Road has been such a helpful, positive, and supportive community for my family. Connecting with other families who have children with rare genetic diseases has made us feel understood and less alone. The family meet-ups and shared resources have been great for learning about local events and exchanging real-life tips around medical care and therapies. Just as meaningful are the caregiver events—giving parents a much-needed chance to step away and feel supported themselves.”​
-Liz O., Parent

-Cashen's Mom, Katie S.

FAQs

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