For Families
Support starts here.
Receiving a diagnosis of Heterotaxy for yourself or a loved one can be overwhelming. We’re here to make sure you’re equipped with the information, resources, and support you need to navigate this journey with confidence and courage.
Newly Diagnosed?
It’s natural to have more questions than answers right now. We understand that these first days and weeks might be filled with uncertainty, but you don’t have to face them alone. Heterotaxy Connection is here to help you make sense of the diagnosis, find trusted information, and connect with others who truly understand. We’re here to walk beside you as you begin this journey.
Adults with Heterotaxy
Receiving a diagnosis of Heterotaxy as an adult can bring both relief and uncertainty. Whether this diagnosis is an unexpected surprise or a long-awaited piece of your story, we’re here to help you understand it, connect with others, and move forward with confidence.
Get Connected
Find the Support You Need
We know that support looks different for every family, and the type of support you need can change as you move through your journey with Heterotaxy. Whether you want to get connected to a growing, active online support group of other Heterotaxy families or just have a question you want to ask, we’re here to point you in the right direction.
Family Programs
Bereavement Support
Heterotaxy Connection’s Bereavement Support offers a safe and compassionate space for families grieving the loss of a loved one with Heterotaxy. Together, we remember and honor every life taken too soon and walk alongside one another toward healing, hope, and connection.
Join Our Patient Registry
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Heterotaxy Connection partners with Citizen Health to power the Heterotaxy Natural History Registry, a secure, patient-driven platform that allows individuals and families to share their medical data to advance research and improve care. By contributing to the registry, you help researchers and clinicians better understand Heterotaxy, paving the way for new discoveries and better outcomes for our community.
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Request records from ALL of your providers with just a few clicks. Records from your providers are catalogued in ONE secure place. From birth records to your last visit—organized, searchable, and accessible when you need it most.
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Access your medical history when and where you need it most, without jumping through hoops.
Ask: “What’s my medication history?” or “Help me prep for our next appointment”, “What’s changed since treatment started?” Get answers from YOUR medical history.
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Citizen Health uses HIPAA-compliant cloud services, including Amazon Web Services (AWS), to securely maintain patient information. All data is encrypted locally and on AWS, a platform trusted worldwide for its commitment to data security.
Citizen Health follows the HIPAA Privacy Rule’s Expert Determination process to minimize the risk of patient re-identification in data shared with research partners. Studies meet strict IRB requirements, with tightly controlled access to all data.
Citizen Health complies with stringent protocols, including Title 21 CFR Part 11. Team members undergo regular training on security policies to ensure patient data is protected at all times. Data is never shared with third parties without explicit patient consent.
Your privacy matters. To learn more about the privacy and security measures taken by Citizen Health, visit: www.citizen.health/privacy
Contact Citizen Health directly at privacy@citizen.health
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Definitely! Since this is a comprehensive registry, having a compiled medical history can help with recalling past details, as well as provide extremely valuable information to researchers working to improve outcomes of future heterotaxy patients.
Research Opportunities
Heterotaxy Connection connects patients and families with current studies dedicated to understanding and improving outcomes for those with Heterotaxy. By participating in research, you play an essential role in advancing science, shaping future treatments, and giving hope to future Heterotaxy patients.
Heterotaxy Heroes.
Heterotaxy Angels.
Read stories of strength, resilience, and hope. Each journey is unique, but together they show the power of connection and the courage of those living with and loving someone with Heterotaxy.
