Find Support
Heterotaxy Connection grew out of the meeting between two moms with children facing the challenges of a life with heterotaxy. The Heterotaxy Connection support groups are the ever-growing result of that connection, a unique corner of the internet where collective wisdom and shared burdens mean that no family needs to walk alone.
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Our main support group is open to individuals with heterotaxy, their primary caregivers, and extended family with approval from the primary caregivers or the individual with heterotaxy.
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As medical science advances, we are seeing more and more individuals with heterotaxy being diagnosed in or surviving until adulthood. This is a group for those members of our community, aged 18 and over, to connect with one another and share the challenges and triumphs that come with living with this syndrome.
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This online support group was formed to provide a source of inspiration, hope, love, friendship, and healing. Please know that you are never alone in this journey; we walk this road of grief right along side you. This is a safe place for all who have lost someone with heterotaxy.
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Este grupo brindará apoyo a nuestra comunidad hispanohablante, equipándola con herramientas para navegar un sistema médico complejo, asegurando que estén conectados a oportunidades de investigación y tomando en cuenta sus necesidades únicas a medida que priorizamos futuras investigaciones médicas. This group will provide support for our Spanish speaking community, equipping them with tools to navigate a complex medical system, ensuring they are connected to research opportunities, and taking into account their unique needs as we prioritize future medical research.