FIA - Foundation for Inherited Arrhythmias

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FIA - Foundation for Inherited Arrhythmias The SADS Foundation is now FIA (Foundation for Inherited Arrhythmias) 💕🧬 Our vision: Life – unlimited by inherited arrhythmias.

Brugada syndrome now has its own diagnosis code: I49.81 ❤️Learn more and save a phone-friendly card for your next appoin...
10/16/2026

Brugada syndrome now has its own diagnosis code: I49.81 ❤️

Learn more and save a phone-friendly card for your next appointment → fiacardiac.org/navigating-care/new-diagnostic-codes.

Did you know? Until this month, Brugada syndrome was diagnosed under a non-specific code that meant it was grouped in with many unrelated heart rhythm conditions. As of October 1, Brugada has a code of its own.

Thanks to FIA's advocacy with the CDC, that one change can help: ✅ Support coverage for the testing and care you need ✅ Make sure every member of your medical team sees your diagnosis ✅ Help researchers find and study people with Brugada ✅ Connect more families to clinical trials

At your next appointment, ask your care team to confirm your diagnosis is recorded as I49.81.

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ACM (ARVC) now has its own diagnosis code: I42.81. ❤️Learn more and save a phone-friendly card for your next appointmen...
10/16/2026

ACM (ARVC) now has its own diagnosis code: I42.81. ❤️

Learn more and save a phone-friendly card for your next appointment → fiacardiac.org/navigating-care/new-diagnostic-codes.

Did you know? Until this month, ACM (also known as ARVC) was coded as "other cardiomyopathy" – grouped in with many unrelated heart rhythm conditions. As of October 1, ACM has a code of its own.

Thanks to FIA's advocacy with the CDC, that one change can help: ✅ Support coverage for the testing and care you need ✅ Make sure every member of your medical team sees your diagnosis ✅ Help researchers find and study people with ACM✅ Connect more families to clinical trials

At your next appointment, ask your care team to confirm your diagnosis is recorded as I42.81.

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CPVT now has its own diagnosis code: I47.22 ❤️Learn more and save a phone-friendly card for your next appointment → fiac...
10/16/2026

CPVT now has its own diagnosis code: I47.22 ❤️

Learn more and save a phone-friendly card for your next appointment → fiacardiac.org/navigating-care/new-diagnostic-codes.

Did you know? Until this month, catecholaminergic polymorphic ventricular tachycardia was coded as "other ventricular tachycardia" – grouped in with many unrelated heart rhythm conditions. As of October 1, CPVT has a code of its own.

Thanks to FIA's advocacy with the CDC, that one change can help: ✅ Support coverage for the testing and care you need ✅ Make sure every member of your medical team sees your diagnosis ✅ Help researchers find and study people with CPVT ✅ Connect more families to clinical trials

At your next appointment, ask your care team to confirm your diagnosis is recorded as I47.22.

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In honor of Sudden Cardiac Arrest Awareness Month, FIA is giving away two AEDs, thanks to our generous partners LifeSure...
10/15/2026

In honor of Sudden Cardiac Arrest Awareness Month, FIA is giving away two AEDs, thanks to our generous partners LifeSure and Cardio Partners! Donate $10 or more this October for a chance to win.

Right now, only about 1 in 10 people survive a cardiac arrest outside the hospital. Give $10 for the 10% and help us change those odds.

Your gift powers FIA’s Saving Lives Program, which supports genetic testing, advocacy, awareness and CPR/AED readiness. Together, we can give more families a second chance.

Every $10 brings us closer to a world where every rare heartbeat is detected, protected and heard.

Head to this link, https://www.fiacardiac.org/get-involved/10-for-the-10?form=10for10, to donate today.

Two winners will be drawn on or about November 2. Give, enter, then share this with three people to help us save lives!

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Open to legal U.S. residents 18+. Ends 10/31/26 at 11:59 p.m. MT. One entry per person. Official rules: fiacardiac.org/get-involved/10-for-the-10. This giveaway is not sponsored, endorsed or administered by, or associated with, Instagram, Facebook or Meta.

We're sharing information about a new clinical trial for CPVT (catecholaminergic polymorphic ventricular tachycardia), s...
10/15/2026

We're sharing information about a new clinical trial for CPVT (catecholaminergic polymorphic ventricular tachycardia), sponsored by Cardurion Pharmaceuticals.

Please click here for additional trial information and study sites currently accepting inquiries for trial participation: https://www.fiacardiac.org/cardurion-cpvt.

Some days you’re doing well, and doing Snoopy's happy dance. Some days you’re napping on the doghouse after your beta bl...
10/13/2026

Some days you’re doing well, and doing Snoopy's happy dance. Some days you’re napping on the doghouse after your beta blockers kick in.

Whichever Snoopy you are today, you’re not alone. Which one are you? Tell us below!

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John’s family was watching a movie together when his dad, Josef, looked down and saw his 10-year-old son lying in an unn...
10/13/2026

John’s family was watching a movie together when his dad, Josef, looked down and saw his 10-year-old son lying in an unnatural position. He knew right away that something was wrong.

John was in sudden cardiac arrest. His mom started CPR immediately. Paramedics arrived six minutes later and used an AED to shock his heart. Her quick action and that AED saved John’s life.

We're working to help more people survive like John did, and to make sure every family affected by an inherited arrhythmia has the support they need.

Your gift of $10 or more helps power more saves and provide support for families like John’s, and gives you a chance to win an AED.

🏷️

No donation necessary to enter or win. Open to U.S. residents 18+. Ends October 31, 2026. Enter by donating $10 or more, or for free by completing the entry form. One entry per person. This drawing is not sponsored, endorsed or administered by, or associated with, Meta, Facebook or Instagram. Entrants release Meta from any liability. Official rules and entry form: fiacardiac.org/get-involved/10-for-the-10 -official-rules.

The RP-A601 study from Rocket Pharmaceuticals is a Phase 1 clinical trial to see if an investigational gene therapy drug...
10/12/2026

The RP-A601 study from Rocket Pharmaceuticals is a Phase 1 clinical trial to see if an investigational gene therapy drug, called RP-A601, is safe and shows early signs of working in adults with PKP2-related ACM (also known as ARVC).

Everyone taking part in the study will receive RP-A601 via a single IV infusion (through a vein in your arm). The study is being conducted at multiple centers in the United States and is open to adults with PKP2-ACM who have an ICD and are considered high risk for life-threatening arrhythmias.

Learn more at https://www.fiacardiac.org/research-opportunities/rocket-pharmaceuticals-gene-therapy-trial-for-pkp2-acm.

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The geneTIC study, short for “Genetics care that is Trauma-Informed,” wants to hear directly from parents and caregivers...
10/11/2026

The geneTIC study, short for “Genetics care that is Trauma-Informed,” wants to hear directly from parents and caregivers about what genetics care has been like for their family: the parts that helped, the parts that were hard, and what could be done differently.

This study is for U.S. parents and caregivers of a child under 18 with an inherited arrhythmia or other genetic condition, and involves a 30-minute online survey. Learn more at https://www.fiacardiac.org/research-opportunities/genetic-study-on-trauma-informed-genetics-care.

Only 1 in 10 people survive an out-of-hospital sudden cardiac arrest. Sammy was one of them. 👉 Give $10 to at https://...
10/10/2026

Only 1 in 10 people survive an out-of-hospital sudden cardiac arrest. Sammy was one of them.
👉 Give $10 to at https://www.fiacardiac.org/get-involved/10-for-the-10?form=10for10in to help save a life, and be entered for a chance to win an AED.

Sammy was 16 when he went into sudden cardiac arrest at a rock climbing gym. Bystanders started CPR right away – and kept going for more than two hours. Today, he's studying physics at Vanderbilt.

We're working to help more people survive like Sammy did, and to make sure every family affected by an inherited arrhythmia has the support they need.

Your gift of $10 or more helps power more saves and provide support for families like Sammy’s, and gives you a chance to win an AED.

🏷️

No donation necessary to enter or win. Open to U.S. residents 18+. Ends October 31, 2026. Enter by donating $10 or more, or for free by completing the entry form. One entry per person. This drawing is not sponsored, endorsed or administered by, or associated with, Meta, Facebook or Instagram. Entrants release Meta from any liability. Official rules and entry form: fiacardiac.org/get-involved/10-for-the-10 -official-rules.

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