Heterotaxy Connection

So proud of these guys 💛

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

Building specialized care for a rare condition doesn’t happen by accident, it takes vision, leadership, and someone willing to turn an idea into a functioning clinical program.

Continuing our speaker series: Developing a Business Plan for a New Clinical Program with Jennifer Dickson, MSN, RN, NE-BC, Vice President of the Heart Center at Children’s Health Dallas. With over 25 years of healthcare experience, Jennifer oversees more than 500 team members and the full spectrum of pediatric cardiac services across Texas, partnering with physicians and multidisciplinary teams to drive strategic growth and improve access to care.

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

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Family Day is coming. And it was made for you.

While the entire conference is going to be amazing with our Scientific Days on September 23rd and 24th offering incredibly valuable insight, from leading physicians and researches all talking heterotaxy, Family Day is the one day built entirely around you!

On Family Day we will talk about advocacy and communication, fever protocol, ER visits, the questions no one prepared you for. We will talk about informed decisions and access to care, the insurance battles, the impossible choices, the “can we change our path” questions that keep you up at night. We will talk about mental health, because carrying ongoing medical trauma is real, and so is raising a teenager who is carrying it too.

And then we will come together for Stronger Together, our family roundtable, where we simply talk, openly, honestly, as one community.

You do not have to attend every day or every session. You do not have to have it all figured out. You just have to show up, even for a piece of the day, and let yourself be around people who already understand.

Virtual Family Day | Sept 25th, 8AM-2PM PDT

Register today: heterotaxy.org/shop-hc

You are never alone in this. We invite you to attend the entire conference and can’t wait to see you.

FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25

For too many rare disease families, the hardest part isn’t just the diagnosis, it’s the silence that follows it. No roadmap, no community, and little data to move research forward.

Continuing our speaker series: Citizen Health: AI-Powered Medical Data Management and Patient Advocacy with Citizen Health, co-founded by Nasha Fitter and Farid Sedaghat after Nasha’s own daughter was diagnosed with a rare disease. Citizen Health empowers patients to drive their own care and research through their health data, working to close the information gap and accelerate treatments for those who need them most.

Swipe through to learn more about Citizen Health, check out the updated agenda, then register to hear everything they have to say at the conference.
👉 heterotaxy.org/shop-hc

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

💛Facing Heterotaxy Together | Virtual Conference

ELEVEN DAYS!!!!!

Register today!
📝 www.heterotaxy.org/shop-hc

💫THE MORE YOU KNOW:

MYTH: Heterotaxy is a heart defect.

FACT: About 80–90% of people with heterotaxy have a congenital heart defect (CHD). Some with heterotaxy have a structurally normal heart. CHD in heterotaxy can range from mild to very complex.

💛 TOGETHER WE THRIVE

🌟 Heterotaxy.org

🚨UPDATE🚨

Save the date (again)! The Utah meet up is back on! New date. New time. New place.

The rescheduled heterotaxy meet up will take place in Salt Lake City on Sunday, September 27th.

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

🗓️ September 27th
⏰ 3 PM
📍Liberty Park (by the Ferris Wheel)
600 Harvey Milk Blvd.
Salt Lake City, UT 84105

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]

💛Meet Victoria, Heterotaxy Warrior💛

TOGETHER WE THRIVE

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📝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

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FACING HETEROTAXY TOGETHER
Virtual Conference | Sept 23-25
Registration | http://Heterotaxy.org/shop-hc

Behind every session, every speaker, and every family who joins us for Facing Heterotaxy Together, there’s a network of partners making it possible. This year, we’re opening up sponsorship opportunities for organizations who want to help power education, research, and connection across the heterotaxy community.

From Conference Partner to Family Advocate, every tier helps expand access to expert-led programming, research updates, and support resources — for families, clinicians, and researchers alike. Sponsors are recognized across our website, social channels, and conference materials, with additional benefits like agenda presentation slots and shareable features at higher tiers.

Swipe through to see the full 3-day agenda and sponsorship benefits breakdown. Interested in partnering with us?
Reach out today 📧 [email protected]

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🧬 FRIDAY FACTS:

Approximately 1 in 4 people with Heterotaxy also have Primary Ciliary Dyskinesia (PCD).

PCD is a rare, inherited disorder that affects tiny hair-like structures called cilia. Cilia line the airways, sinuses, ears, and reproductive tract. Their job is to move mucus, bacteria, and debris out of the body.

KNOWLEDGE IS POWER.

💛 Heterotaxy.org