Heterotaxy Connection

💛 Meet Ivey, Heterotaxy Warrior 💛

TOGETHER WE THRIVE

📝Can we share your Heterotaxy journey? Use the link below to share ⬇️:
https://heterotaxyconnection.dm.networkforgood.com/forms/storytelling-content-form
📲 Instagram scroll up to ➡️linkin.bio ➡️Share Your Story

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

Living with heterotaxy and medical complexity, day in and day out, can be overwhelming. Let’s talk about ALL of it!

Over the coming weeks, we are pulling back the curtain, introducing the speakers and topics that will be shaping conversations at this year’s virtual conference.

First up: Insights From a Complex Care Clinic with Scott R. Callahan, MD FAAP, a look inside the world of complex care from someone who’s spent his career building it.

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

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

This is a FREE webinar and will be full of helpful information. Whether you’re new to blended diets or want to strengthen your foundational knowledge, this webinar offers practical, evidence-based guidance for everyone, parents, caregivers and healthcare providers.

💫FRIDAY FACTS:

No one should navigate heterotaxy alone. Heterotaxy Connection exists to provide community, resources, and hope for every family touched by this diagnosis. If you need support please reach out to us.

✉️ [email protected]

💛 TOGETHER WE THRIVE

This is an amazing opportunity for anyone to join!

The National Organization for Rare Disorders (NORD®) is bringing select educational sessions from their Living Rare, Living Stronger® programming to all of us, virtually!

Insurance challenges can create barriers to care for people living with a rare disease and their families, but you don't have to navigate them alone.

Join us on Thursday, July 30, from 3–4 p.m. ET for a free webinar all about overcoming common insurance barriers. Learn practical tips, ask questions during Q&A, and gain insights from the experts.

Register now: https://bit.ly/4yxbteT
The recording will be shared with registrants who were unable to attend.

Featuring speakers from the NORD Rare Disease Centers of Excellence at Children's Hospital of Philadelphia and University of Colorado Anschutz, as well as Metropolitan State University of Denver.

💛🦋Meet Stetson, Heterotaxy Warrior🦋💛

TOGETHER WE THRIVE

📝Can we share your Heterotaxy journey? Use the link below to share ⬇️:
https://heterotaxyconnection.dm.networkforgood.com/forms/storytelling-content-form

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

🚨 CANCELED 🚨Due to an Extreme High Heat Warning in the area, the South Jordan, Utah get together has been canceled today 🚨
************************************************

☎️ Calling all Utah Heterotaxy Warriors and all family and friends!!!!

There is a heterotaxy get together coming up on Monday, July 27th.

Join a group of heterotaxy family, friends and caretakers creating connection and community right where they live. All are welcome!

🗓️ July 27th
⏰ 6pm-8pm
📍Oquirrh Shadows Park
10300 S 4000 W
South Jordan, UT 84081

If you would like to organize a Meet Up in your own community, let us know and we will help you get started.
📧 [email protected]

REGISTER TODAY: http://Heterotaxy.org/shop-hc

Join us this September for three days of education, connection, and hope as our community comes together to learn from leading experts, share experiences, and support one another.

🗓 September 23–24 | 🩺 Medical & Research Sessions
🗓 September 25 | 💛 Family-Focused Sessions

Whether you are a healthcare professional, parent, caregiver, or living with heterotaxy yourself, this conference was designed with YOU in mind.

Together, we will explore topics including:
🔹 Complex multidisciplinary care
🔹 The latest research & innovations
🔹 Building Centers of Excellence
🔹 Navigating care & making informed decisions
🔹 Quality care throughout adulthood
🔹 Practical strategies for living well with a complex condition

No matter where you are on your heterotaxy journey, you will find knowledge, encouragement, and a community that understands.

No one should face heterotaxy alone…together we thrive.

⭐️ Register today at Heterotaxy.org/shop-hc and reserve your place at our virtual Conference, Facing Heterotaxy Together.

We can’t wait to welcome you this September!

💫THE MORE YOU KNOW:

Because heterotaxy is so rare, some wait months or even years for an accurate diagnosis.

AWARENESS SAVES LIVES
HETEROTAXY 💛 TOGETHER WE THRIVE

⭐️ Heterotaxy.org

⭐️WARRIOR WEDNESDAY⭐️

We want to share YOUR story!

Every heterotaxy warrior journey shared helps someone else understand heterotaxy a little better; a new parent researching a diagnosis, a family feeling alone, a friend wanting to understand what you’ve been through.

Your story is part of that awareness…the diagnosis, the treatment, the milestones, the hard days, and the memories of those we have lost. Every warrior journey has the power to help others feel seen and helps the world understand heterotaxy a little more.

👉 Ready to share? You can share a video or complete the short form. Both are linked below (link in bio on Instagram)

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

🎥 Video: https://senja.io/p/heterotaxyconnection/r/warriorstories

Your story matters. Help us build understanding and awareness, one journey at a time.
💛 TOGETHER WE THRIVE 💛