Webinar Recap: Citizen Health + Team Telomere – Your Story. Your Data. Our Power.

Webinar Recap: Citizen Health + Team Telomere – Your Story. Your Data. Our Power.

Thank you to everyone who joined our community webinar on Citizen Health in August 2026! Katie Stevens, Team Telomere CEO, and community parent Jena Robertson explained how the Citizen Health platform helps families gather their own medical records and use them, and how sharing de-identified data can speed up research on telomere biology disorders (TBDs). Here are the main points from the session.

Why this matters now

The TBD field is starting to advance therapies, but data on TBD patients is still limited. Health records are scattered across many institutions, patient portals and third-party sites, including social media groups where the platform, not the patient, ends up owning what’s posted. Research data is usually collected one project at a time and only reflects the patients at a single academic center. Team Telomere partnered with Citizen Health because we believe your data should belong to you.

Your data should work for YOU first

Citizen Health gathers your electronic health records from different institutions into one place. Once your records are organized, they can help you:

  • Prepare for appointments and summarize your medical history for new specialists
  • Track symptoms, medications and major events over time
  • Support insurance appeals, school plans (IEPs), disability paperwork and second opinions

…and then for the community

Members can choose to share de-identified data for research. Data that identifies you is never shared, and research use has to be approved by an Institutional Review Board (IRB). Pooled data like this builds natural history studies, which show how TBDs begin and progress, which organs are affected, how different genes shape disease, and where diagnosis or care could be better. Any future drug or therapy will need this kind of study.

Early results from our community

Members can choose to share de-identified data for research. Data that identifies you is never shared, and research use has to be approved by an Institutional Review Board (IRB). Pooled data like this builds natural history studies, which show how TBDs begin and progress, which organs are affected, how different genes shape disease, and where diagnosis or care could be better. Any future drug or therapy will need this kind of study.

  • 49 participants are already in Team Telomere’s proof-of-concept dataset.
  • Several TBD genes are represented. As expected, TERT is the most common, followed by RTEL1, TERC, TINF2, DKC1, PARN and NHP2. Participants without an identified gene are included too, which matters because about 20-30% of TBD families still don’t have a gene identified.
  • Team Telomere received a grant to run a full natural history study with participants, starting with a first cohort. 
  • Researchers have been very excited about pooling data across many institutions instead of relying on a single center’s cohort. This includes groups working on screening studies and multi-center research.

Katie also described a possible study: asking community members who have had a bone marrow transplant to share their outcomes. This could help show the long-term results of transplant protocols.

AI Advocate (“Ari”)

Jena shared how she uses Ari, Citizen Health’s AI Advocate, to care for her child. Ari can draw on your own records to:

  • Draft insurance appeal letters
  • Explain the diagnosis in plain language, including for siblings
  • Send relevant new articles on topics you’ve asked about
  • Keep your search history so you can come back to it later

You can reach Ari in the Citizen Health app, on the web or by text.

Transcribing appointments

The app can record and transcribe visits, both in person and telehealth. It labels who is speaking, and you can ask Ari follow-up questions about the transcript, such as “what was the medication they mentioned?” You can delete transcripts at any time. Tell your care team before you record.

Points addressed in the Q&A:

  • No Android app yet. The mobile app is iPhone/Apple only for now. Android users can still use Citizen Health on the web, and we’ve passed this feedback to Citizen.
  • Records don’t refresh automatically yet. After your first sign-up, ask Citizen to re-request your records after new visits. Automatic updates are planned for next year.
  • Privacy and control. Citizen Health is HIPAA compliant. You decide what you share, and you can withdraw at any time.
  • Helping other communities. Citizen Health was built for pediatric neurodevelopmental disorders. Team Telomere is the first community on the platform that spans ages and organ system manifestations, so we are helping expand what it can do.
  • Citizen’s support team usually answers within about an hour, so reach out to them with technical questions!