Heterotaxy Connection

Heterotaxy Connection Heterotaxy Connection is a nonprofit supporting individuals and families affected by heterotaxy.

We provide education, advocacy, and community connections to improve awareness, care, and outcomes

đź’«THE MORE YOU KNOW: Heterotaxy is rare.4 out of 10 Heterotaxy Warriors will not live to blow out the candles on their 20...
08/28/2026

đź’«THE MORE YOU KNOW:

Heterotaxy is rare.

4 out of 10 Heterotaxy Warriors will not live to blow out the candles on their 20th birthday.

This is the reality of rare. And why every family deserves a community fighting alongside them.

đź’› TOGETHER WE THRIVE

🌟 Heterotaxy.org

08/26/2026

đź’›HETEROTAXY WARRIORS!đź’›

These are the faces of heterotaxy.
Every one of them has a story most people will never know exists. Heterotaxy is rare…and rare means most of the world has no idea it’s even out there.
We are changing that, one warrior story at a time.

Your family’s story could be the reason someone else feels less alone today. It could be the reason a doctor recognizes the signs sooner. It could be the reason a teacher is able to understand a student just a little better. It could be the reason heterotaxy gets a little less rare-and-unknown, and a little more understood.

Are you ready to share part of your story? đź’›
Help spread awareness by sharing your warrior’s journey. Complete the following form for your Heterotaxy Warrior to be featured on an upcoming Warrior Wednesday!
Story Form: https://heterotaxyconnection.dm.networkforgood.com/forms/storytelling-content-form
________________________________________
📲 Instagram: scroll up to our bio and use the “Linkin.bio” to access the story form.

Every heterotaxy family deserves a village and this is why we existđź’›Behind every warrior, every diagnosis, every hospita...
08/25/2026

Every heterotaxy family deserves a village and this is why we existđź’›

Behind every warrior, every diagnosis, every hospital stay, there is a family looking for their people. That’s where you come in.

We are growing our Fundraising Committee and looking for kind, passionate humans ready to help build that village.

Here’s what it looks like:
👉 Meet via Zoom once a month
👉 Help us find new ways to fund heterotaxy support and spread awareness in homes, hospitals, and doctors’ offices across the country
👉 Grow Circle of Hope, our monthly giving community, by connecting HC with new sustaining donors

You don’t need a medical background, just a heart for showing up. If you’ve ever wanted to turn your compassion into action, this is it.

Get involved and inspire change around you. đź’›
Volunteer🙋‍♀️ https://forms.gle/qjPyP7yP1CsoWZPN9

_____________________________________________

FACING HETEROTAXY TOGETHERVirtual Conference | Sept 23-25Carrying ongoing medical trauma doesn’t end when the appointmen...
08/24/2026

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

Carrying ongoing medical trauma doesn’t end when the appointments do, it’s something families live with every day, and having the language and tools to manage it can change everything.

Continuing our speaker series, and part of our Family Day lineup: Managing Mental Health When You Carry Ongoing Medical Trauma with Chrissy Salley, PhD, Assistant Clinical Professor in the Department of Psychiatry at Icahn School of Medicine at Mount Sinai and Director of Clinician Engagement & Outreach for Courageous Parents Network. A pediatric psychologist with experience across pediatric hospitals, oncology, and rare disease settings, Dr. Salley now focuses her private practice on helping caregivers navigate complex child health and parenting challenges.

Swipe through to meet Dr. Salley, then check out the full 3-day agenda attached to see everything Family Day has in store.

Register today👉 heterotaxy.org/shop-hc

______________________________________
*The attached agenda is subject to change
**All sessions listed in Pacific Daylight Time (PDT)

FACING HETEROTAXY TOGETHERVirtual Conference | Sept 23-25Facing Heterotaxy Together brings world-class physicians, resea...
08/22/2026

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

Facing Heterotaxy Together brings world-class physicians, researchers, and specialists together in one place, all speaking directly with the community that needs them most.

Don’t miss Friday’s Family Day. It will be packed with practical sessions on advocacy, informed decision-making, and mental health, plus live breakout discussions built for patients and caregivers.

Three days, one topic, with answers you may not find anywhere else.

Register today👉 Heterotaxy.org/shop-hc

_____________________________________

*The attached agenda is subject to change
**All sessions listed in Pacific Daylight Time (PDT)

🧬 FRIDAY FACTS:Some people with heterotaxy are born without a spleen (asplenia). Others have multiple small spleens (pol...
08/21/2026

🧬 FRIDAY FACTS:

Some people with heterotaxy are born without a spleen (asplenia). Others have multiple small spleens (polysplenia), which may or may not function normally. A poorly functioning or absent spleen increases the risk of serious bacterial infections.

KNOWLEDGE IS POWER.

đź’› Heterotaxy.org

*************************************************

FACING HETEROTAXY TOGETHERVirtual Conference | Sept 23-25Surgery for a heterotaxy patient is never one-size-fits-all, an...
08/20/2026

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

Surgery for a heterotaxy patient is never one-size-fits-all, anatomy that doesn’t follow the usual playbook calls for a surgeon who can adapt in real time.

Continuing our speaker series:
Innovative Surgical Procedures: Special Considerations for Heterotaxy with Brian W. Gray, MD, Associate Professor of Pediatric Surgery at Indiana University School of Medicine and Riley Hospital for Children. Dr. Gray is a Pediatric General and Thoracic Surgeon with a clinical and research interest in congenital surgical conditions and extracorporeal membrane oxygenation (ECMO).

Register below to hear everything Dr. Gray has to say at the conference.
👉 heterotaxy.org/shop-hc

*****************************************

FACING HETEROTAXY TOGETHERVirtual Conference | Sept 23-25For families navigating both heterotaxy and PCD, having reliabl...
08/17/2026

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

For families navigating both heterotaxy and PCD, having reliable data behind their care can make all the difference, and that data doesn’t collect itself. It takes years of groundwork, coordination, and a whole network of clinical sites working together.

Continuing our speaker series:
Insights From Creating the PCD Registry with Michael O’Connor, MD, Associate Professor of Pediatric Pulmonary Medicine at Vanderbilt Children’s Hospital and PCD Clinical Center Director at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Dr. O’Connor has spent years helping build the North American PCD Foundation’s clinical registry, now in its sixth year with over 30 participating sites.

Swipe through to meet Dr. O’Connor, then register to hear everything he has to say at the conference.
👉 heterotaxy.org/shop-hc

******************************************

FACING HETEROTAXY TOGETHERVirtual Conference | Sept 23-25For many heterotaxy families, a complex organ transplant means ...
08/15/2026

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

For many heterotaxy families, a complex organ transplant means an entire care team coordinating behind the scenes…cardiology, surgery, and anesthesia all working in sync to keep a child safe.

Continuing our speaker series:
Multidisciplinary Coordination for a Complex Solid Organ Transplant with Lori A. Aronson, MD, Professor of Clinical Anesthesia & Pediatrics at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati. Dr. Aronson specializes in anesthesia for cardiac procedures and liver and abdominal transplantation, bringing a unique, compassionate perspective to the care of medically complex children.

Swipe through to meet Dr. Aronson, then register to hear everything she has to say at the conference.
👉 heterotaxy.org/shop-hc

*****************************************

Address

2882 E Ruby Valley Drive
Draper, UT
84005

Website

Alerts

Be the first to know and let us send you an email when Heterotaxy Connection posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Heterotaxy Connection:

Shortcuts

Share

Category