Serving families and caregivers of children with rare genetic diseases

Help the Helpers

Odin's Heart Foundation serves the families and caregivers of patients suffering from rare medical conditions by providing them with financial and community support. We know that among us, there are helpers who will rise and be there for us, no matter what it takes. Without them, the situation and outcome will be drastically different and extremely difficult. This kindness and selflessness for others can sometimes erode a helper's care for themselves, and they often feel isolated or without support and even unseen. Our mission ensures these quiet heroes who walk among us are supported and cared for.

Odin and Rhys on Bridge-cropped2

Be like Odin

Odin's Heart Foundation was created in honor of the selflessness, kindness, and generosity of Odin Stone. Odin's brother, Rhys Stone was born with TRNF13B and KMD5B, 2 rare genetic disorders which created numerous challenges for the Stone Family. Odin, who was no stranger to struggle in his very young life, became a big brother, friend, and source of strength, inclusion, and love. Learn more about Odin's journey and help us ensure helpers are seen. #belikeOdin


Our community is full of people who want to help. As we develop our outreach programs, we'd love to hear from you!

Donate Now

Your support of Odin's Heart will help us reach helpers be seen and get much-needed support.


Shop Odin's Gift Store for a wide variety of ways to show your support for Odin's Heart.

Our Inspiration

The Unsung Heroes of Rare Disease: Caregivers

In the realm of rare genetic diseases, caregivers often find themselves wearing numerous hats – from being parents and transforming into caregivers performing tasks nurses, or other medical professionals perform, working multiple jobs, forego their own care due to lack of time or resources needed. The journey can be incredibly demanding, emotionally charged, and physically…

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Belding grandmother starts nonprofit for rare disease caregivers
By: Marisa Oberle Posted at 9:02 PM, Nov 24, 2022 and last updated 10:38 PM, Nov 24, 2022 ...
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Stone Family – Aleese and Rane Stone’s Story
Listen to the Story Sanctuary Podcast: Aleese's Family When my husband Rane Stone and I ...
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