About Us
The leading patient advocacy organization dedicated to uniting families, clinicians, and researchers to improve the lives of those affected by Heterotaxy.
Bringing together patients, families, and clinicians to advance research, improve outcomes, and strengthen support networks, Heterotaxy Connection is committed to building a world where no one faces Heterotaxy alone.
Our Story
It all started with a single connection.
Heterotaxy Connection began with a simple phone call between two mothers searching for answers. When Necia answered Heather’s call from the toy aisle at Target, it sparked a connection that grew first into a community and eventually into an international organization dedicated to supporting families and improving outcomes for those affected by Heterotaxy around the world.
Our Mission
Heterotaxy Connection seeks to empower individuals and families affected by Heterotaxy though a global community of connections, resources, and support, partnering with medical professionals and researchers to advance care and help every person with Heterotaxy thrive.
Our Vision
Heterotaxy Connection envisions a world where every individual and family touched by Heterotaxy feels deeply supported, fully understood, and truly empowered. Through community, accessible education, and ever-advancing research, we strive to ensure that no one faces this journey alone. We value timely and accurate diagnoses, compassionate and expert care, and the best possible quality of life that every person with Heterotaxy and their loved ones deserve.
Our Team
United by lived experience and a shared commitment to fostering collaboration, education, and research that enhance care and empower the Heterotaxy community worldwide, our leadership is a team united by their commitment to ensuring that every family receives the support they need while navigating the challenges of this condition.
Our Partners
Because no one should have to face Heterotaxy alone.
Heterotaxy Connection is proud to partner with these incredible organizations in our work to ensure that no one walks this road without support.
