HeterotaxyConnection

A nonprofit organization dedicated to the support, education, and empowerment of the heterotaxy community. Connecting families with resources and each other.

[HeterotaxyConnection @HeterotaxyOrg]

Every year, Heterotaxy Connection posts virtual tributes on November 4th to remember and honor our beloved angels. If you would like to include your angel, or if you would like to update previous years' submissions, please click (or copy/paste) this link: https://t.co/7iYqwDBk4p

[HeterotaxyConnection @HeterotaxyOrg]

Every year, Heterotaxy Connection posts virtual tributes on November 4th to remember and honor our beloved angels. If you would like to include your angel, or if you would like to update previous years' submissions, please click (or copy/paste) this link: https://t.co/7iYqwDBk4p

[HeterotaxyConnection @HeterotaxyOrg]

We welcome Nick Sabin as Board President & Karli Richards as VP. As we grow, our leadership will be growing as well in order to advance our mission to collaborate, advocate for Heterotaxy awareness & drive medical progress. We empower our community together. #HeterotaxyConnection

[HeterotaxyConnection @HeterotaxyOrg]

Hannah Klein, Miss Ohio, is also a Heterotaxy Warrior and advocate for rare diseases!
Let's show her how supportive our community can be by sending her lots of votes on https://t.co/I866SObHYA
Check out some highlights here:
https://t.co/5RhnYtep3O
https://t.co/zAbQhlhWG4

[HeterotaxyConnection @HeterotaxyOrg]

Today’s Facing Heterotaxy Together session starts at the core of medicine: the human story. James Robinson (@morethanamemoir) shares his family’s journey to find strength in the most unexpected places while navigating the world of Heterotaxy and heartbreak. #FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

This is the best part of this conference. What you see here are families, scientists, surgeons and clinicians. They are casually sitting together for breakfast, sharing personal stories, laughing, marveling, and just being humans. Barriers are taken down and hope flows freely.

[HeterotaxyConnection @HeterotaxyOrg]

The is why we’re so passionate about bridging the gap between clinicians and families. Because when surgeons sit down at the dinner table with the families, we’ll build a better future together. Want to be part of it? https://t.co/Pnn3h32GgO #FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

Institutions like @BostonChildrens are driving cardiac surgery forward, providing options like ventricular recruitment where the only paths used to be limited to Fontan circulation or a primary biventricular repair. #FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

He’s now 11, and he loves hiking in the mountains of Utah. His personal record? 11 miles, and he was still pink at the end of the trail. #FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

Our second clinical session, Pulmonary Disease and Ciliopathies, has highlighted just how many questions remain unanswered when it comes to Heterotaxy and ciliary dysfunction. Visit https://t.co/wBNIMChi6E to find out how you can join the conversation. #FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

Our first clinical session today focused on classification, development, and prenatal diagnosis of Heterotaxy. We also heard from two mothers, Samantha and Alison, who shared about the family experience. Together, we build a better future for families facing Heterotaxy. #FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

Day 2 of Facing Heterotaxy Together is clinician focused, with co-chair Tom Saba (@UMich) stressing that we are here to co-learn alongside families who live with Heterotaxy every day.
#FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

Happening now in Boston: Facing Heterotaxy Together, the first joint scientific and family conference dedicated solely to advancing the science and care of Heterotaxy. During today’s family track, we learn from experts while the kids are having a ball in their own room!
#FHT2025

[HeterotaxyConnection @HeterotaxyOrg]

Exciting advancements in Heterotaxy care! Join us for the Facing Heterotaxy Together conference! VIRTUAL OPTIONS AVAILABLE!
Clinicians: https://t.co/3Kr8PRMqlD
Families: https://t.co/bvsaY7kIsr

[HeterotaxyConnection @HeterotaxyOrg]

Exciting advancements in Heterotaxy genetics and diagnostics! Meet our expert conference speakers: 🩺 Dr. Geddes, 🩺 Dr. Geva, 🩺 Sarah, 🩺 Dr. Shapiro, and 🩺 Dr. Wilson.

[HeterotaxyConnection @HeterotaxyOrg]

**CORRECTION & HEADS UP!** Last day for the group rate on conference hotel rooms is SUNDAY, Sept 21st. Book 3 nights, get 1 FREE! Don’t miss this deal!

[HeterotaxyConnection @HeterotaxyOrg]

Join us at the Facing Heterotaxy Together Conference this October! In-person & virtual registration open! 🩺 Featuring experts on immunity & infection control.

[HeterotaxyConnection @HeterotaxyOrg]

Coming to the Facing Heterotaxy Together Conference? Deadline to book rooms at discounted rate has been extended to September 30th!

⭐️ Families, book 3 nights, get 1 free! ⭐️

Register here: https://t.co/vr85pxrDEO
Book rooms here: https://t.co/tZWmh3WOyU

See you in Boston!

[HeterotaxyConnection @HeterotaxyOrg]

Just 5 short weeks until the Facing Heterotaxy Together conference! Still need to register? Click one of these links below
CLINICIANS https://t.co/m78qEhcyzn
FAMILIES AND INDIVIDUALS https://t.co/ZUjCfbYB3U

Meanwhile, allow us to introduce you to some of our expert speakers!