Heterotaxy Connection

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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

💛🦋 Their lives mattered. Their stories matter. Their memories live on 🦋💛November 4th is Heterotaxy Remembrance Day, a da...
10/13/2026

💛🦋 Their lives mattered. Their stories matter. Their memories live on 🦋💛

November 4th is Heterotaxy Remembrance Day, a day dedicated to honoring and remembering the beloved warriors we carry in our hearts.

We invite families who have experienced the loss of a heterotaxy warrior to share a favorite photo and their warrior’s name for our Remembrance Wall on our website and social media tributes on November 4th.

Every warrior deserves to be remembered, and we would be honored to help keep their memory alive.

We know this invitation may bring tender emotions. Please share only if and when it feels right for you. There is no expectation to participate, and those who choose to remember privately are equally held in our hearts.

🦋 Forever loved. Forever our warriors.

💛 Share your warrior’s memory: https://heterotaxyconnection.dm.networkforgood.com/forms/remembrance-day-submission

📝 Please note, if you have submitted in past years, you will need to resubmit with a new form this year as we can’t include past years submissions.

📅 Please submit by: October 28, 2026

💛💛💛💛💛💛💛💛💛💛💛💛💛💛

🍁MOTIVATION MONDAY🍂Hard days and hopeful days can exist in the same story. This is heterotaxy.You can be…Tired and Grate...
10/12/2026

🍁MOTIVATION MONDAY🍂

Hard days and hopeful days can exist in the same story. This is heterotaxy.

You can be…
Tired and Grateful
Scared and Hopeful
Overwhelmed and Strong.

There is room for ALL of it here!

💛 Describe, in the comments, how you are entering this week in ONE word.

💫THE MORE YOU KNOW: Not everyone with intestinal malrotation needs preventive surgery.Management is individualized becau...
10/09/2026

💫THE MORE YOU KNOW:

Not everyone with intestinal malrotation needs preventive surgery.
Management is individualized because the risks and benefits of surgery depend on the anatomy, symptoms, and other medical conditions.

💛 TOGETHER WE THRIVE

🌟 Heterotaxy.org

10/06/2026

Today, we approved the first heart valve device designed to grow with children. The Autus Size-Adjustable Valve, a surgically implanted pulmonary heart valve for pediatric patients with congenital pulmonary valve disease can be expanded after surgery to keep pace with growth. The adjustable valve may mean fewer repeat surgeries for children as they get older.

https://www.fda.gov/news-events/press-announcements/fda-approves-first-heart-valve-designed-grow-children

Congenital heart defects are among the most common types of birth defects in the United States, affecting about 1 in every 100 births. The valve was approved through the premarket approval pathway, the FDA's most rigorous review process for medical devices.

10/06/2026

MONDAY MOTIVATION 🌻

Hope doesn’t always look like believing everything will be okay. Sometimes hope is simply deciding to keep going.

…And it’s okay if sometimes we need someone else to remind us of that.

💛Who has been a source of hope in your heterotaxy journey? Share their name in the comments and how they have been a help in your life.

🧬 FRIDAY FACTS:Heterotaxy can be associated with pulmonary atresia or pulmonary stenosis.These conditions affect blood f...
10/02/2026

🧬 FRIDAY FACTS:

Heterotaxy can be associated with pulmonary atresia or pulmonary stenosis.
These conditions affect blood flow from the heart toward the lungs.

KNOWLEDGE IS POWER.

💛 Heterotaxy.org

💛Meet Addelyn, Heterotaxy Warrior💛TOGETHER WE THRIVE📝We want to share your journey! Every story helps raise awareness, i...
09/30/2026

💛Meet Addelyn, Heterotaxy Warrior💛

TOGETHER WE THRIVE

📝We want to share your journey! Every story helps raise awareness, inspire others, and build a stronger community of hope and understanding. Use the following link to share:

https://heterotaxyconnection.dm.networkforgood.com/forms/storytelling-content-form

📲 Instagram scroll up to ➡️linkin.bio ➡️Share Your Story

Josheline Ray

Address

2882 E Ruby Valley Drive
Draper, UT
84005

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