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PAVING THE WAY TO INCLUSION
Supporting and empowering children with disabilities, rare diseases and their families.
Rare Road Foundation is a non-profit organization, created inspired by our own challenges that we face as families of children with rare genetic diagnoses. We aim to offer support, community, joy, and opportunities to others in similar situations. We envision a future where rarity and disabilities aren't barriers, but reasons to celebrate our shared humanity.
UPCOMING EVENTS
The Rare Road Gala: Black & White EditionSat, Feb 28The Brook
THE RARE ROAD STORY
Rare Road was born from two families walking the same uncertain path.
When our daughters, Olivia and Remy, were each diagnosed with rare genetic conditions, we quickly learned that “rare” doesn’t just describe the diagnosis - it describes the experience. There were no large networks, few resources, and even fewer people who truly understood what we were going through.
We created the Rare Road Foundation to change that - to make sure no family has to face this journey feeling alone.
WHAT WE DO
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INCLUSIVE PLAYGROUNDS
We work with towns and partners to design playgrounds where every child can play side by side. Inclusion benefits everyone - fostering empathy, understanding, and connection across the entire community.
ADAPTIVE BIKES
Our Adaptive Bike Program gives children with disabilities the freedom and joy of movement - their own bike, built just for them.
FAMILY GATHERINGS
We bring families together to share experiences, build friendships, and find strength in one another. Because community is as essential as care.
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WHY IT MATTERS
Rare diseases don’t get the same attention, research or funding as other conditions — not because they don’t matter, but because the numbers are small. Some rare diseases affect only a handful of children in the entire world. That means there’s often no funding, no foundation, and no community to lean on.
That’s where Rare Road comes in. We exist to fill that gap, to create community where there was none, to build inclusion where barriers once stood, and to make sure every child, no matter how rare their diagnosis, has a place to play, belong, and thrive.
Because when families feel supported, whole communities grow stronger.
And when we make space for those who are rare, we create a world that’s better for everyone.
