Our Mission and Vision

Heterotaxy Connection is a registered 501(c)3 non-profit dedicated to supporting, educating, and empowering families affected by Heterotaxy Syndrome. Born out of a connection between just two moms, Heterotaxy Connection is now the largest heterotaxy patient advocacy group in the world, serving families affected by heterotaxy around the globe.

Our Mission

At Heterotaxy Connection, our mission is to create a world where individuals and families affected by heterotaxy find the support, education, and empowerment they need to live their best lives. We are dedicated to making a positive impact in the lives of those touched by this rare congenital condition.

Supporting Families and Individuals: We are committed to providing unwavering support and a nurturing community for families and individuals dealing with heterotaxy. Our goal is to be a trusted resource, offering emotional and practical support throughout their journey. We believe that no one should face this challenge alone, and we strive to create a strong, compassionate network that fosters understanding, connection, and resilience.
Educating through Medical Conferences with Experts: Heterotaxy Connection is dedicated to promoting awareness and understanding of heterotaxy among the medical community and the general public. We organize and participate in medical conferences, bringing together world-renowned experts, researchers, and healthcare professionals to share knowledge, advancements, and best practices. By facilitating these educational opportunities, we aim to enhance the quality of care and support available to those affected by heterotaxy.
Empowering Those with the Condition: We believe that individuals with heterotaxy can lead fulfilling lives and reach their full potential. Heterotaxy Connection is committed to empowering those with the condition, providing resources and guidance to help them overcome challenges and achieve their goals. Through advocacy, mentorship, and a strong community, we inspire hope and encourage every individual to embrace their unique journey, fostering a sense of pride and confidence.

By uniting families, healthcare professionals, and individuals affected by heterotaxy, Heterotaxy Connection strives to build a world where every heart with heterotaxy beats with strength, resilience, and a sense of belonging. Together, we work towards a future where the impact of heterotaxy is minimized, and where everyone can live their best life.

Our Vision

We aim to enhance diagnosis through comprehensive education, both for patients and medical professionals, to empower people with heterotaxy by collaborating closely with the medical community to establish a network of centers of excellence, to fuel ongoing research through the creation of a patient registry and to support the development of treatment protocols, ensuring accurate and timely care for heterotaxy patients globally.