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Get access to all your medical records and receive personalized insights to support your journey. Power research for Friedreich's ataxia (FA) treatments.

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A new FA Platform available on Citizen Health

Citizen Health has launched a new platform for the Friedreich’s ataxia community where they bring all your medical records together in one place. This is an opportunity to centralize your medical information AND to help accelerate research—without any extra work from you. Early access is now available to the first 150 people on the platform.

One platform. 3+ powerful benefits.
Built specifically for the FA community.

First, Citizen Health centralizes everything

You sign up (5 minutes). Citizen Health collects your medical records and organizes them in your secure profile. Citizen Health can gather every record from every specialist—neurology, cardiology, genetics, endocrinology, therapy notes—into one place you control.

Then, answers about YOUR journey

Within your portal, you will gain access to an AI Advocate tool. You can easily ask questions about your medical history of the AI tool, like “Show my echocardiogram results over time”. Whether you need a pre-visit summary for a specialist or a record of your medications for a new doctor, the information is instantly available. You can also track trends in gait, bloodwork, and vision, and see how medications are impacting your symptoms. With the AI Advocate tool, your entire FA journey becomes more accessible.

All while driving forward research

When ready, you can share de-identified data with FARA and FARA-approved research, pharmaceutical companies, and academic researchers. Your real-world experiences such as cardiac assessments, changes in walking distance, pre-diagnosis symptoms, speech progression, etc., can directly inform the researchers developing next-generation treatments. Citizen Health transforms this into research-grade insights for the FA community.

New Feature

Your personal FA AI Advocate Tool

Ask questions and get answers tailored to YOUR FA journey. From “What’s changed since starting a new treatment?” to “Help me understand these coordination changes.

Only 150 spots are available—and you’re invited!

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* These are samples for demonstration purposes. See disclaimer below.

Private. Secure. Personalized for you.

Make sense of care, control your data, and move forward with confidence.

Private

You own your data completely. Nothing is shared with third parties without your explicit consent.

Secure

HIPAA-compliant cloud services securely maintain information and all data is encrypted locally and on AWS.

Personalized

YOUR journey powers YOUR insights. Data remains private in Citizen Health—no third-party AI access or training.

Power your journey

Created by People Who've Been There

Citizen Health was founded by rare disease caregivers, patients, and clinicians who understand the daily reality. They've lived the fragmented records, the appointment prep, the hope that journeys could drive research forward.

That's why Citizen Health—already trusted by 100+ advocacy groups—partnered with FARA to build this platform: to centralize your complete health story, provide an AI Advocate that answers YOUR questions, and create a way to power research from home.

Real understanding. Real solutions. Built with both heart and knowledge for the rare disease community.

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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."

Trusted by 100+ patient communities

We're proud to collaborate with these dedicated patient advocacy groups to better serve rare disease communities.

Ready to join?

Click the button below to be among the 150 people living with FA to register with Citizen Health.

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.