Your advocate for research, care, & community

The SADS Community Registry on Citizen Health—where your Arrhythmogenic Cardiomyopathy (ACM, also known as ARVC)  journey finds expert guidance, contributes to breakthrough research, and turns questions into clarity.
Get early access

Early access for the first 500 people

When our ACM community unites, we’re a voice for change. The SADS Foundation and Citizen Health now amplify that voice through technology—delivering personal guidance for navigating care, while accelerating research. Protected through HIPAA-compliant cloud services with end-to-end encryption.
Including people with:
Arrhythmogenic Cardiomyopathy (ACM) |  Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)  |  Arrhythmogenic Left Ventricular Cardiomyopathy (ALVC)  | Biventricular arrhythmogenic cardiomyopathy  |  DSP/PKP2 and other gene-associated ACM | Gene-elusive ACM | And other genetic heart conditions!

Unlocking insights for you. Unlocking breakthroughs for all.
All on one platform.

Illustration of a magnifying glass surrounded by floating documents with highlighted lines on a dark background.

First, we centralize everything

Our platform brings every record—cardiology, EP, genetics, labs, and more - into one secure location. Your health info is organized, searchable, and at your fingertips. It can help you prepare for appointments, learn more about your genetic testing results, and make decisions with your team.

Illustration of a user profile page

Then, answers about YOUR journey

With AI advocate, ask questions like: “How has my ejection fraction changed over time?” or “What did my last cardiac MRI show?” Track imaging results (ECHO/MRI), medications, device info, and symptoms, get summaries for new specialists, and surface key questions you can ask your care team. Private, secure, and personal to you.

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All while driving forward research

Many patients, parents, and caregivers want to do more than manage their condition: they want to make care better for the next person. With one click, your de-identified data adds to our Arrhythmogenic Cardiomyopathy community’s collective knowledge. Together, we’re building real-world evidence that could accelerate discoveries, improve risk assessment, and ultimately enhance care for ACM.

New Feature

Powering the future of Arrhythmogenic Cardiomyopathy care

Your AI Advocate tool helps you make sense of Arrhythmogenic Cardiomyopathy, providing personalized guidance for navigating your care – from early questions, to tracking imaging and rhythm trends, or helping you prep for an appointment. If you choose to contribute to research, your de-identified data joins a collective resource that could help accelerate discoveries for the entire Arrhythmogenic Cardiomyopathy community.

Get personalized guidance for navigating care and add your experience to a resource built for ACM’s future.

* These are samples for demonstration purposes. See disclaimer below.
Special invitation
Be one of the first 500 patients to complete your profile and help shape the SADS Platform.
Get early access now

Private. Secure. Personalized for you.

Make sense of your ACM treatment plan, control your data - and move forward with confidence.
Private
You own your data completely. Your records are yours to view, download, or remove at any time.
Secure
HIPAA-compliant cloud services securely maintain information, and all data is encrypted locally and on AWS.
Personalized
YOUR journey powers YOUR insights. Get answers pulled from your personal health records.
Power your journey

A New Way Forward

What if getting the personalized medical support you need for day-to-day life could also advance science that changes the field? When you sign up, you contribute to:
Understanding why some people with ACM experience more arrhythmias or faster progression than others
Accelerating development of earlier detection tools and targeted therapies
Identifying which care strategies work best for different genes and ACM subtypes
Building evidence to improve family screening and shared decision-making about activity and ICDs
Surfacing insights about exercise, imaging changes, and arrhythmia burden 

Start now
A phone showing the Citizen Health AI Advocate interface on the screen. The screen reads "What can I help you with today? You can try one of these ideas or you can ask something else."

Your insights today can transform science tomorrow.
Take 5 minutes. Change the future for Arrhythmogenic Cardiomyopathy.

Our Community Registry offers a new path—where you have full access to your health data, and your questions spark discoveries. Your experience matters—and your participation can accelerate the research that shapes tomorrow. Five minutes to begin. A future of possibilities.
Join the first 500

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The responses shown are simulated samples for demonstration purposes only. When you use AI Advocate, it provides personalized insights based on your actual medical records. AI Advocate is designed to help you understand and organize your medical information but does not provide medical advice, diagnosis, or treatment recommendations. Always consult with your healthcare provider before making any medical decisions. Your medical information remains private and secure within Citizen Health, and is not shared with third-party AI companies or used to train their algorithms.