10/15/2026
Different families. Different answers. Same questions.
That’s the reality so many heterotaxy families have faced, and it’s exactly why Heterotaxy Connection and HRC3 are working together.
At our virtual conference, Facing Heterotaxy Together, families, clinicians, and researchers shared a virtual room, and something shifted. Families and professionals weren’t simply working side by side. They were working together.
This collaboration has taught us so much, and we are still learning:
💛 Families bring what no data set can: lived experience of what care actually feels like.
💛 Clinicians and researchers bring the expertise to understand why care varies and what we might do about it.
💛 Together, we can build a common, multicenter platform to describe this population far more systematically.
With pilot centers already in place and more partner centers on the way, centers of excellence can become referral points for institutions with less access to heterotaxy specialists.
Today we have families, clinicians, researchers, and hospitals willing to work together. That’s not where we started, and it’s only the beginning of where we are going.
Thank you, again, to everyone who joined us, to our HRC3 partners, and to every family who lent their voice. 💛
Together, we thrive.
