For Families and Caregivers

Heterotaxy Connection strives to be a place where hope and support converge to create a community bound by resilience and understanding. We recognize that everyone's path is unique, and we seek to come alongside each family the the way that best supports them, whatever their journey may hold.

The heart of our organization is connection. We believe that the most fundamental way to educate and empower one another is to come alongside each another as we navigate the difficult road of heterotaxy.

Starting a new journey on an uncharted road is hard, but we're here to come alongside you. If you've just received a diagnosis of heterotaxy for a loved one (or yourself) we'd love to provide you with resources to help you move forward with confidence.

Partnering with The Claire the Heart Warrior Foundation makes it possible for families of hospitalized heterotaxy heroes to receive a get well gift. Founded in honor of Claire Ruf, who passed away in 2023, The Claire the Heart Warrior Foundation was created to help other families facing the challenges of congenital heart disease and heterotaxy. Through education, advocacy, and financial support, they strive to make a positive impact on the lives of those affected by these birth defects.

At Heterotaxy Connection, your family is our family, and we strive to honor every one of our heroes that has been taken too soon. The unfortunate reality is that not all of our heroes are able to live long lives, and sometimes we must say "see you later."