No family should have to face a Rare Disease alone.
Care for Rare Foundation exists to connect rare disease families with practical support, trusted resources, community, and hope—from diagnosis through every stage of the journey.
What We Do
CONNECT
We bring together families, caregivers, and advocates navigating the same rare disease journey so no one faces it in isolation.
SUPPORT
We provide direct resources and guidance to families at every stage, from the day of diagnosis through the long road ahead.
EMPOWER
We equip families with knowledge, tools, and community so they can advocate fiercely for themselves and their loved ones.
HOPE
We believe a diagnosis is not the end of the story — and everything we do is built around the possibility of a better future.
Newly Diagnosed? We’re here for you.
We know how overwhelming the first days and weeks can feel. Care for Rare was built by a family who has been exactly where you are. Whether you need a community that understands, guidance on what to do next, or simply someone to talk to — we are here for you from day one.
Our Story
When Julia's son Asher was diagnosed with Classic Galactosemia at just nine days old, her family entered a world that most people have never heard of — and for which there is no FDA-approved treatment. Like so many rare disease families, they faced uncertainty, a shortage of resources, and a medical system that was not always equipped to help them.
Care for Rare was founded because that experience should not be the norm. Thirty million Americans — one in ten people — live with a rare disease, yet the majority of the more than 7,000 known rare conditions still have no approved treatment. Families wait an average of four to seven years just to receive a correct diagnosis. The gap between need and support is vast, and it is personal.
Our mission is to close that gap. We build bridges between families and the resources, community, and hope that can make an impossible situation more bearable — and we do it because we have lived it.
Partner With Us
Be the Brand That Showed Up
One in ten Americans lives with a rare disease — that's your customers, your employees, your neighbors. Most of them have never seen a business they frequent acknowledge that reality. When your brand stands with Care for Rare, you become something rare yourself: the company that finally said something.
This isn't about charity messaging. It's about using the platform you've already built to shine a light on a community the world has largely overlooked. Every touchpoint becomes a moment of awareness. Every partnership becomes a real act of advocacy.
Go Zebra" Month — February Rare Disease awareness activations in your store and on social
Sponsor a Box — cover the cost of a welcome box for a newly diagnosed family
Co-Branded Rare Items — limited edition products with proceeds and your name alongside ours
30 Million Americans
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7,000+ known rare diseases
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95% have no FDA-approved treatment
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30 Million Americans ~ 7,000+ known rare diseases ~ 95% have no FDA-approved treatment ~
Every family deserves a community behind them.
Join Care for Rare — as a family seeking support, a partner ready to invest, or an advocate who believes rare disease families deserve better. Together, we connect, support, empower, and bring hope.