HeterotaxyConnection

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HeterotaxyConnection

HeterotaxyConnection

@HeterotaxyOrg

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

Katılım Haziran 2014
213 Takip Edilen204 Takipçiler
HeterotaxyConnection
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
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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
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HeterotaxyConnection
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.
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HeterotaxyConnection
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
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HeterotaxyConnection
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
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HeterotaxyConnection
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 hrc3.org to find out how you can join the conversation. #FHT2025
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HeterotaxyConnection
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
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HeterotaxyConnection
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
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HeterotaxyConnection
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
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HeterotaxyConnection
HeterotaxyConnection@HeterotaxyOrg·
Exciting advancements in Heterotaxy genetics and diagnostics! Meet our expert conference speakers: 🩺 Dr. Geddes, 🩺 Dr. Geva, 🩺 Sarah, 🩺 Dr. Shapiro, and 🩺 Dr. Wilson.
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HeterotaxyConnection
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!
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HeterotaxyConnection
HeterotaxyConnection@HeterotaxyOrg·
Join us at the Facing Heterotaxy Together Conference this October! In-person & virtual registration open! 🩺 Featuring experts on immunity & infection control.
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HeterotaxyConnection
HeterotaxyConnection@HeterotaxyOrg·
Just 5 short weeks until the Facing Heterotaxy Together conference! Still need to register? Click one of these links below CLINICIANS ow.ly/my4e50WPQsL FAMILIES AND INDIVIDUALS ow.ly/fmgt50WPQsM Meanwhile, allow us to introduce you to some of our expert speakers!
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