Our families

If your family is affected by Tay-Sachs, Sandhoff or a Rare Disease, you are not alone.​

Rare Find Foundation is here to help from the day of diagnosis through day-to-day care, tough end-of-life decisions and beyond.

With an incredible network of Clinical specialists to provide expertise, resources to provide guidance and families to share experiences, rest assured there is a community here to support you when you need it.

We can help advocate to ensure you get the best equipment as fast as possible, provide respite trips and attend our family conference.

Rare Find Foundation is committed to helping Tay-Sachs and Sandhoff children and their families. We are here for you.

Archie’s Story

Archie Ronald made his entrance into this world on the 27th of November 2015. Our bright eyed boy filled the hole that was always empty within my heart. He gave the word love a whole new meaning for us.

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Bodhi’s Story

Bodhi William Hurle was born in January 2017, was diagnosed in May 2018 with Tay Sachs Disease and passed away February 2019.

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Sebby’s Story

When we had Sebby, like so many parents Marc and I dreamed about the future and life we could help shape for our beautiful son, and how we could support him in every way possible.

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