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About Heterotaxy

Heterotaxy is a congenital condition that disrupts the normal left-right asymmetry of the body. This can result in any of the internal organs being misplaced, malformed, multiplied, or missing entirely. This disruption in asymmetry ensures that no two cases of heterotaxy are exactly alike.


The cause of heterotaxy is not fully understood; some genetic links are being explored, but not all cases have been found to have a genetic cause, so research is still needed.

Individuals with heterotaxy require lifelong multidisciplinary care and medical monitoring.

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Links to other resources, including the consensus paper published in 2022, A Multi-Disciplinary, Comprehensive Approach to Management of Children with Heterotaxy

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Click here for videos from past family conferences, including keynote sessions and panel discussions

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