FIA - Foundation for Inherited Arrhythmias

09/07/2026

Although the exact warning signs are slightly different for each condition, the following warning signs span all inherited arrhythmias conditions ⚠️

These conditions are serious and complications can be potentially life-threatening if left untreated. It is important to get an early and accurate diagnosis, which can help you get treatment and make any lifestyle changes needed to keep yourself safe.

Although there is currently no cure for these conditions, advances in medical care are helping people live and thrive beyond their diagnosis.

Does this sound like you or someone you know? Share to spread awareness, and if these symptoms sound familiar, visit https://www.fiacardiac.org/navigating-care/seeking-a-diagnosis.

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09/06/2026

💙 Most people have never heard of Timothy syndrome – help us change that!

Estimated to affect fewer than 1,000 people in the U.S., Timothy syndrome is a genetic heart rhythm condition that can cause dangerous arrhythmias and needs more awareness and support.

Looking for support, or to learn more about Timothy syndrome? Visit https://www.fiacardiac.org/conditions/timothy-syndrome.

If Timothy syndrome has touched your life or family, we'd love to hear your story in the comments. Leave a 💙 if you're part of the Timothy syndrome community, or share your story below! ⬇️

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09/06/2026

For people with heart conditions, symptoms often appear outside of the doctor’s office — like a quick flutter after a second cup of coffee, breathlessness climbing stairs, or a restless night of sleep.

These moments are often forgotten by the time of the next doctor’s visit, but they could represent important patterns in cardiovascular disease progression.

The OCORO Heart Study is designed to help researchers better understand these patterns at the population level, which may inform future research and care for others.

Learn how your daily data could be turned into important insights for cardiovascular disease
research. 🔗 https://go.geneticcardiomyopathy.org/OCORO

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09/06/2026

💙 Most people have never heard of short QT syndrome (SQTS) – help us change that!

Short QT syndrome is considered extremely rare, and its true prevalence remains unknown. It's a genetic heart rhythm condition that can cause dangerous arrhythmias and needs more awareness and support.

Looking for support, or to learn more about SQTS? Visit https://www.fiacardiac.org/conditions/short-qt-syndrome.

If SQTS has touched your life or family, we'd love to hear your story in the comments. Leave a 💙 if you're part of the SQTS community, or share your story below! ⬇️

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09/05/2026

Join expert Peter Aziz, MD of Cleveland Clinic as he explains Long QT Syndrome (LQTS) ❤️

Learn about LQTS, how it's diagnosed, the latest treatment and management options, and what living with LQTS can look like. Dr. Aziz will also talk about clinical trials and potential new therapies.

The webinar will conclude with a live Q&A, allowing you to ask your questions directly to our expert speaker!

Learn more and register at https://www.fiacardiac.org/updates/long-qt-syndrome-lqts.

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09/05/2026

If you live with LQTS, you know the feeling of being asked – often in a stressful moment – what your genetic testing results were, which medications and doses you're on, or what your device settings are.

We've partnered with Citizen Health to create our FIA Care Tool, which gathers your medical records from across your different healthcare teams into one secure place that you control and helps you see your own health trends over time, including the metrics that matter most for LQTS – like your QT interval.

Their new feature, Ari, allows you to access that information with a quick text message. Ari is an AI advocate you can message like a person: it can pull together a summary of your condition, your current medications and doses, and your latest results, as well as helping with the administrative side of care by helping book or track your appointments.

For a community where medication safety and self-advocacy is so important, having your own information at your fingertips can make a big difference.

Learn more at https://www.fiacardiac.org/care-tool.

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09/04/2026

FIA better communicates who we are today and who we're here for: everyone living with an inherited arrhythmia condition.

Everyone means that if you’ve been living with your condition for years, if you’ve lost a loved one to these conditions, if you’re the first in your family diagnosed, or even if you don’t have a name for your gene or condition yet – this is your home.

Why does that matter? Because a name more closely aligned with current medical terminology helps more families find us: families who are searching for answers about long QT syndrome, CPVT, Brugada syndrome, ACM (ARVC), and anyone else impacted by a genetic heart rhythm condition.

A name people understand is a name that helps save lives.

Learn more at https://www.fiacardiac.org/updates/sads-is-now-fia.

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09/04/2026

How is LQTS diagnosed?

Your heart doctor may suspect LQTS based on your personal medical history, your family health history, and careful examination of your ECG. If your story is suspicious, a QTc exceeding 470 ms in males and 480 ms in females is sufficient evidence for a diagnosis of probable LQTS – assuming that medications which prolong the QT interval or other QT-prolonging medical conditions have been ruled out.

Patients may have a normal QT interval at baseline, but they may demonstrate a prolonged QTc on an exercise stress test. Nearly half of patients with LQTS NEVER have an event or symptom!

Learn more about diagnosis and testing at https://www.fiacardiac.org/conditions/long-qt-syndrome.

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09/04/2026

For 10-year-old Anna, a heart murmur during a routine well child appointment led to a long QT syndrome (LQTS) diagnosis. In a series of events her mom, Jessica, calls "miraculous," her heart condition was identified before a single symptom ever appeared.

When her doctor called back weeks after a routine visit, following a hunch, he set in motion the diagnosis her mom Jessica believes saved her life. Months later, that early catch meant the family knew to avoid a common medication that can be dangerous with LQTS.

Today, Anna plays soccer and basketball with a solid treatment plan behind her. Anna's genetic variant is de novo - new in her, meaning that her parents and brother don't have the condition.

The results brought relief and grief at once, because they left Anna as the only person in her family living with LQTS. "She was alone in our family, and that was really hard," Jessica says.

This fall, that changes. At our International Family Conference, Anna will be surrounded by other kids who share her diagnosis for the first time.

Read Anna's story: https://www.fiacardiac.org/updates/how-a-heart-murmur-led-to-a-diagnosis-of-a-rare-heart-condition.

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09/03/2026

Our webinar, "Arrhythmogenic Cardiomyopathy" with Dr. Harikrishna Tandri is happening now! Join us here:

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