Join the AGSAA Community on Citizen Health

Join Now

About AGSAA x CITIZEN HEALTH

Did you ever wish the collective insights of our AGS community could be brought together to drive real progress in care and research? That’s exactly what we’re building with our partners at Citizen Health - a platform designed to turn our families’ lived experiences and medical data into knowledge that accelerates treatment discovery.

First, Citizen Health centralizes everything

You sign up in just 5 minutes. Citizen Health collects your medical records and organizes them in your secure profile. Every record from every specialist - neurology, cardiology, genetics, endocrinology, therapy notes - all in one place you control, stored forever.

Then, get answers about YOUR journey with your Personal AI Advocate

Within your portal, you'll have access to an AI Advocate tool that knows your complete medical story. Ask questions like:

  • "Show my MRI results over time"

  • "What medications has my child tried for seizures?"

  • "Help me prepare for our upcoming neurology appointment"

  • "Can you summarize my child's medical history for a second opinion?"

Whether you need a pre-visit summary for a specialist or tracking trends in symptoms and treatments, the information is instantly available. Your entire AGS journey becomes more accessible and manageable.

All while driving forward AGS research

When ready, you can share de-identified data to drive forward research. Your real-world experiences; developmental milestones, symptom progression, treatment responses, can directly help researchers better understand the condition and advance treatment options

Help our community unlock the insights hiding in our medical data and make huge leaps in understanding AGS and accelerating treatment options.

Click the image above to sign up today in less than 5 minutes or go to https://www.citizen.health/partners/agsaa.

WHO CAN JOIN?

Right now, both U.S. and international AGS families can sign up and benefit from Citizen Health’s platform.

🇺🇸 For U.S. families:

Citizen will securely collect your child’s medical records directly from their providers or hospitals. We’re currently enrolling families with a clinical diagnosis of AGS Types 1–9, as well as those receiving care for AGS-like conditions under “AGS – Other: Undiagnosed/Related Diagnosis.”

🌍 For international families:

You can create a Citizen Health account and upload your own medical records to access the same powerful tools and insights. The onboarding process is available in seven languages, and the AI Advocate already supports multiple international languages in beta.

While Citizen cannot collect records directly from hospitals outside the U.S., international families are encouraged to upload their genetic reports and medical documentation, which can still contribute to the global AGS research dataset if you choose to share them.

HOW DOES IT WORK?

Create an Account (5 Minutes)

In a newly-improved and simple five-minute onboarding process, patients or their caregiver will create a profile and provide:

  • A few pieces of demographic information

  • A list of providers where they have received care

Note: Guardianship papers will also be needed if a caregiver is signing up on behalf of a patient 18 years or older.

Citizen Collects Your Medical Data

Citizen will do all the work to collect your medical data from all your providers and points of care, then provide you access to your data in your secure, digital profile.

You Control What Happens Next

With your data finally all in one place, you're in control:

  • Use your AI Advocate to get instant answers about your medical history

  • Share your Citizen profile with your care team to help inform healthcare decisions

  • Choose to share de-identified data (stripped of personal identifiers) to help power AGS-specific research

Need help? Just reach out to support@citizen.health and a human will guide you through the process.

WHY WE PARTNERED WITH CITIZEN HEALTH

✓ Easiest way for our community to build our own global natural history studies and accelerate research for treatment options, complementing research being collected by partner institutions.

✓ Real value to AGS families today by empowering them with all their medical data in one secure, digital place—PLUS a personal AI Advocate that knows their complete story.

✓ Proven track record with rare disease communities—Citizen has already accelerated research into many rare conditions and is deeply committed to rare patient communities.

✓ Faster answers for researchers—We can give researchers the data they need to design better clinical trials, faster.

✓ FDA-accepted data—Citizen data has been used as the single source of natural history data for an FDA submission package. Long and expensive in-person trials are no longer the only option.

Learn even more at https://www.citizen.health/communities.

BENEFITS FOR AGS FAMILIES

🔐 Gain Access & Control

All your medical records from different clinicians and hospitals collected for you and stored in one place, forever

Share your information easily for second opinions, care coordination, or when you urgently need it in the emergency room

💡 Get Answers with Your AI Advocate

NEW! Ask your personal AI Advocate questions like:

  • "Show me all the medications we've tried"

  • "Help me prepare for our appointment next week"

  • "What developmental milestones did my child reach and when?"

Learn from your disease community:

  • Discover how your symptoms, current medications, and therapies compare to similar patients at a glance

  • Access community insights powered by collective AGS data

RESEARCH-SPECIFIC VALUE

✓ Unlocks trapped data: Access the full power and insights from our community's medical history without waiting years for traditional observational studies to complete.

✓ Accelerates clinical trials: Data can be used to understand disease progression, select endpoints for clinical trials, and potentially serve as control arms in studies.

✓digital natural history studies: Citizen creates the easiest natural history solution for communities without the burden of in-clinic visits or long surveys.

✓ Revenue sharing opportunity: When your extracted data is included in revenue-generating programs (and you've consented to contribute your de-identified data), you're eligible to receive compensation! You'll get a notification from Citizen (support@citizen.com) with details about the amount and how to access it.

✓ Powers better research by:

  • Improving understanding of AGS and how it affects individuals

  • Providing perspective on how the disease changes over time

  • Improving endpoint selection for clinical trials

  • Improving clinical trial planning and design

PRIVATE. SECURE. PERSONALIZED FOR YOU.

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. Your data remains private in Citizen Health - no third-party AI access or training.