Carney Complex Coalition

Today is Carney Complex Awareness Day 🍀

First described by J. Aidan Carney in 1985 at the Mayo Clinic, Carney Complex is an ultra-rare, multi-neoplastic syndrome affecting just over 1,000 individuals worldwide. Its genetic basis was later identified by researchers at the National Institutes of Health led by Constantine Stratakis.

Carney Complex can affect multiple systems in the body, leading to tumors, endocrine disorders, and recurrent cardiac myxomas, one of its most serious risks.

Due to its rarity and clinical variability, diagnosis is often delayed, and access to appropriate screening and care can be limited. Individuals with Carney Complex require lifelong, multidisciplinary care and specialized monitoring.

At present, there are no treatments that target the underlying disease biology. Care is focused on surveillance, early detection, and management of complications.

On this Carney Complex Awareness Day, we recognize the importance of education, advocacy, and research. Increased awareness supports earlier diagnosis, improves access to care, and advances the development of targeted therapies for our community.

A special thank you to Jennifer Woods for her work in raising awareness for over a decade. Follow the links from the Carney Complex Awareness post to frame your picture, learn more about the history of Carney Complex, connect with our global community, and find resources for support. You can also explore our YouTube channel () for presentations from our November patient conference.

𝗛𝗮𝗽𝗽𝘆 𝗗𝗶𝘀𝗰𝗼𝘃𝗲𝗿𝘆 𝗗𝗮𝘆! 🦓🍀 41 Years of Answers.

𝙒𝙝𝙮 𝙬𝙚 𝙘𝙚𝙡𝙚𝙗𝙧𝙖𝙩𝙚 𝙩𝙤𝙙𝙖𝙮
April 24th is about honoring the breakthrough that finally gave our condition a name and patients a path forward.
𝙅𝙤𝙞𝙣 𝙩𝙝𝙚 𝘾𝙚𝙡𝙚𝙗𝙧𝙖𝙩𝙞𝙤𝙣

𝗙𝗿𝗮𝗺𝗲 𝘆𝗼𝘂𝗿 𝗽𝗿𝗼𝗳𝗶𝗹𝗲 𝗽𝗶𝗰𝘁𝘂𝗿𝗲: https://www.carneycomplex.org/carney-complex-awareness-day-2026/

𝗟𝗲𝗮𝗿𝗻 𝘁𝗵𝗲 𝗛𝗶𝘀𝘁𝗼𝗿𝘆: Read about Dr. Carney’s perspicacity and how he discovered Carney Complex, how Dr. Stratakis and his team discovered the PRKAR1A gene, how the Carney Complex community started. (https://www.carneycomplex.org/blogs/)

𝗖𝗼𝗻𝗻𝗲𝗰𝘁: Join the Carney Complex Community Facebook Group to meet the global family that exists because of this discovery. (https://www.facebook.com/groups/carney.complex)

𝗦𝘂𝗽𝗽𝗼𝗿𝘁:
1. Check out the official Canrey Complex Awareness page, follow, like and share some of the previous posts to help spread the word and raise awareness on April 24th 2026! (https://www.facebook.com/carneycomplexawareness)
2. Head on over to the newly founded Carney Complex Coalition follow and like. (https://www.facebook.com/profile.php?id=61572792690055)

🌟 This post marks the end of our Session Highlights series! We’ve arrived in sunny Phoenix and are so excited to kick off the conference—whether you’re joining us in person or virtually!

💬 In the Doctor Q&A session, Carney complex experts will answer pre-submitted questions from members of the Carney complex community—and if time permits, they’ll also take live questions.

🧠 The final session, How to Address Unmet Needs of the Carney Complex Patient Community, will be an interactive brainstorming session—a follow-up to Friday’s discussion.

It’s going to be an inspiring wrap-up to an incredible two days! 🎉

Join us at the Cortisol Summit this Saturday to learn more about endocrine disease in Carney complex from Dr. Jérôme Bertherat—one of the leading experts on the condition and the principal investigator of the Carney Complex natural history study conducted in France.

Registration is still open. Visit https://csrf.net/cortisolsummit2025/ for more information.

Join us at the Cortisol Summit for insightful talks on Carney complex!

Dr. Jerome Bertherat and Dr. Constantine Stratakis will share important updates on Carney complex research and patient care.

If you haven’t registered yet or want to learn more, visit https://csrf.net/cortisolsummit2025/

11 days to go!!!

Enjoy two days of education, support, and networking at the Cortisol Summit, a patient conference hosted by Cushing's Support and Research Foundation with co-hosts Adrenal Insufficiency United and Carney Complex Coalition. There will be optional social activities, including a party Saturday evening to celebrate CSRF's 30th anniversary!

Register here: https://csrf.net/CORTISOLSUMMIT2025/

In this session, patients and loved ones will have the opportunity to share their personal experiences living with Carney Complex (CNC). Our goal is to identify the community’s unmet needs. We will use these insights—together with input from Saturday’s brainstorming session—to shape future programs and guide the priorities of the Carney Complex Coalition.

If you haven’t registered yet or want to learn more, visit https://csrf.net/cortisolsummit2025/

Hello everyone!

We've put together session highlights for the presentations focused on Carney Complex, and we’ll be sharing 1–2 of these each week leading up to the conference. We’re so excited to see you—whether virtually or in person—on October 7th and 8th at the Cortisol Summit in Phoenix, Arizona!

If you haven’t registered yet or want to learn more, visit https://csrf.net/cortisolsummit2025/

You’ve seen a few glimpses — now it’s time to officially say hello 💙

We’re proud to formally introduce the Carney Complex Coalition — a new nonprofit dedicated to supporting individuals living with Carney complex and those who love them.

The Carney Complex Coalition was born out of a simple but urgent need: connection, support, and progress for a community often overlooked.

Carney complex is rare. That makes it easy to miss, and even easier to misunderstand. But behind every diagnosis is a person, a family, a network of questions and hopes. Our coalition exists to stand in that gap—with resources, advocacy, and a shared vision for better outcomes.

We’re building something from the ground up, and we invite you to be part of it.

✅ Patients and families
✅ Researchers and clinicians
✅ Allies and advocates

This is your space, your cause, your coalition.

📣 Follow us, share our mission, and help us grow this movement.

Together, we can raise awareness, drive research, and create lasting change.

🧬 Got a question about Carney complex you've always wanted to ask a medical expert?

Now’s your chance! As part of the Carney Complex programming at the Cortisol Summit, we’re hosting a Doctor Q&A session.

🗓 The Cortisol Summit takes place November 7–8 in Phoenix, AZ, bringing together leading experts and the rare disease community.

📝 Submit your questions here: https://forms.gle/kzCsf3gSrkPvJtyZA

Anyone can submit — even if you aren’t able to attend the conference.

Your voice matters — and your questions help shape the conversation.

Cortisol Summit - Doctor Q&A Have a question you've always wanted to ask a Carney complex (CNC) expert? Now’s your chance! On November 8th, at the Cortisol Summit in Phoenix, AZ, you’ll have the opportunity to get your questions answered by leading CNC experts. Please submit your questions below — you’re welcome to subm...