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Family Conferences

With a rare disease community spanning the globe, many heterotaxy families go their whole lives without meeting another family that walks the same road as them. Our family conferences are an opportunity for families to connect in person, for children with heterotaxy to share space with other kids who have the same scars and similar stories. We seek to create a space for growth, learning, and connection by inviting experts in the science of heterotaxy, pairing their presentations with thoughtful discussions from members of the community, and holding space to celebrate the heroes here with us and remember the ones we've lost.

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Our first conference after COVID-19 changed the landscape for families of medically complex children. Pairing the in-person meetup with a virtual option meant more families could join together to learn and find support. Click the photo to see more from our 2023 conference!

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Our second family conference was in Salt Lake City, Utah, where families enjoyed each others' company nestled at the base of the Wasatch Mountains. Click the photo to see more from our 2019 conference!

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Our inaugural Heterotaxy Connection family conference brought families together in Cincinnati, Ohio where they connected in person for the first time. Click the photo to see more from our 2015 conference!

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