At Team Titin, our mission is rooted in Connection, Advocacy, Care, and Research. We are excited to share a powerful new partnership that brings all four pillars together in a meaningful way.
We are proud to partner with Citizen Health – a platform designed to support individuals and families living with rare and complex conditions like TTN-related muscle and heart disorders.
What Is Citizen Health?
Citizen Health is a free, secure platform that helps individuals and families take control of and gain insights from your medical information while also creating opportunities to advance research. If you have been wondering: “How AI might make life with titinopathy easier?” – this platform is one potential answer.
Here are some of the benefits of Citizen Health for TTN Families:
- Get access to all your medical records in one secure place – Citizen does the work to collect them on your behalf if you’ve received your care in the US. International families may upload their own records to centralize and organize them on the platform. This helps to organize medical records and centralize medical history which helps to manage complex care.
- Use an AI Health Advocate to better understand complex medical reports and prepare for appointments.
- Easily share records with doctors, therapists, or schools.
- Optionally contribute de-identified data to support TTN research.
- Use the Citizen Health iPhone app to transcribe and summarize medical visits (currently available in the U.S.)
This is more than a tool – it’s a way to turn everyday healthcare experiences into meaningful progress for the entire titin community.
A Tool for Today – and a Foundation for Tomorrow
For families, managing TTN-related conditions often means navigating multiple providers, complex records, and evolving care needs. Citizen Health helps simplify that experience – bringing everything together in one place.
But just as importantly, it creates something our community urgently needs:
better, more connected data to drive research forward.
When individuals choose to participate, their experiences contribute to a broader understanding of titinopathy – helping researchers identify patterns, improve care, and accelerate the path toward new treatments.
Strengthening Research Through Connection
If you already have a Citizen Health profile, you have the option to enable data sharing with Team Titin.
This step is completely optional – but incredibly impactful.
You can opt in at the time of onboarding and change this consent at any time from your profile to share your contact details, diagnosis, and onboarding status with us as your patient advocacy group. This allows us to:
- Better understand the needs of our community
- Connect individuals with relevant research opportunities
- Strengthen advocacy efforts with real-world insights
- Help drive forward research that reflects the true lived experience of TTN families
- Connect with Citizen Health staff regarding records collection if needed
Together, this creates a more connected and informed community – one that can accelerate progress in meaningful ways.
New Feature: Citizen Health Mobile App
Citizen Health has introduced a new iPhone mobile app, making it even easier to access your health information and AI tools on the go.
What You’ll Find in the App:
- Your records—in your pocket
Access your full medical history anytime - AI Advocate on demand
Get insights and answers based on your personal health data - Appointment recording and summaries
Stay present during visits while the app captures key details - Clear, shareable next steps
Leave appointments with organized summaries you can revisit or share
This feature helps transform medical visits into clear, actionable information—so you can focus on what matters most in the moment.
Designed for Real Life
Citizen Health is built with real families in mind:
- Setup takes less than 5 minutes
- For U.S.-based care, records are collected for you
- For care outside the U.S., you can upload records directly
There are no additional appointments, no extra burden – just a smarter way to manage your health information.
Your Data, Your Choice
As always, your data stays under your control.
Participation in research and data sharing is completely optional, and your information is handled with strong privacy protections. You decide what to share, when to share it, and with whom.
Join the Movement
Every data point represents a real person, a real journey, and a real opportunity to learn.
By coming together as a community – organizing our data, sharing our experiences, and supporting research we can help shape a future with:
- Better understanding of titinopathies by using real-world medical data
- More effective care
- Accelerate treatment development
We are excited to bring this resource to the Team Titin community and to take this next step, together.
Join Citizen Health: www.citizen.health/team-titin