In the News | Press Highlights
Global Genes has selected Citizen Health to power RARE-X, its rare disease data collection program serving more than 10,000 participants across 135 patient advocacy communities, pairing the patient-reported data RARE-X has spent years structuring with medical records Citizen Health retrieves from more than 4,000 US institutions, and giving every RARE-X participant access to Ari, Citizen Health's AI teammate.
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Press Release: Sofie's Journey Selects Citizen Health to Lead RARE Epilepsy Arena
August 18, 2026
See moreCitizen Health announces partnership with Sofie's Journey to lead and produce the RARE Epilepsy Arena at 2026 Epilepsy Awareness Day at Disneyland, California.
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Fierce Healthcare: Angelman Syndrome Foundation partners with Citizen Health to embed AI agent into everyday care
July 29, 2026
Heather Landi
See moreThe Angelman Syndrome Foundation and Citizen Health announced a partnership to bring Ari, Citizen Health's AI teammate for rare disease families, to the Angelman community, giving caregivers a tool that handles seizure tracking, specialist record coordination, and insurance navigation while connecting those who choose to share data to the research pipeline advancing new treatments.
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Citizen Health CEO Farid Vij joined Bloomberg Intelligence’s Vanguards of Healthcare to discuss how AI is closing the advocacy gap in rare disease, why community-driven patient data is one of healthcare’s most underutilized assets, and how building trust with patients means ensuring they share in the value their data creates.
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Press Release: The Sumaira Foundation Selects Citizen Health as Its Real-World Data Partner
June 18, 2026
See moreCitizen Health announced a partnership with The Sumaira Foundation (TSF), a global nonprofit for rare neuroimmune diseases, naming Citizen Health its real-world data partner across TSF's communities to accelerate neuroimmune research and provide an AI teammate for every patient.
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Citizen Health co-founder Nasha Fitter joins Nicole Johnson on the Global Genes RARECast podcast to discuss how they built a parent-led virtual biotech to advance a FOXG1 gene therapy into human clinical trials and how real-world patient data from Citizen Health helped them identify the right clinical endpoints to support FDA approval.
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A mom and tech entrepreneur building an AI advocate for rare-disease families like hers
April 11, 2026
Ian Thomas
See moreCitizen Health's AI-powered platform works with patients and rare disease advocacy groups to build communities for different conditions, using medical records, genetic information and other patient-reported experiences to create a dataset that can be queried by those same patients, their families or clinicians to find answers.
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Reigniting the Discovery Engine for Tomorrow’s Cures: Why AI Matters for the Life Sciences
April 2026
See moreOpenAI's white paper explores how AI accelerates rare disease discovery by connecting fragmented patient data and lived experience. Citizen Health is featured for pioneering a patient-centered approach where families organize health data and use AI to generate insights that inform research and care.
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Following her daughter’s diagnosis with the ultra-rare neurodevelopmental disorder FOXG1 syndrome, Fitter co-founded the FOXG1 Research Foundation and Citizen Health. Her mission: to not only develop a foundation-led gene therapy but also to create a platform that supports families throughout their care journey while gathering essential health data.
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Could relaxed regulations boost gene therapy for ultra-rare diseases?
March 19, 2026
Caroline Catherman
See moreAs the FDA proposes a new "plausible mechanism" approval pathway for ultra-rare disease therapies, Citizen Health CEO Farid Vij weighs in on what it means for gene therapy development. Vij emphasizes that regulatory innovation must be paired with advances in evidence generation — ensuring that relaxed premarket standards don't simply shift the burden to postmarket surveillance without the infrastructure to support it.
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NPR Podcast: A rare brain disorder sparks a parent-led global research effort
March 7, 2026
Dr. Joe Sirven
See moreNasha Fitter is the co-founder and CEO of the FOXG1 Research Foundation. Nasha helped launch a global effort to accelerate a cure. She's also the co-founder and Chief Business Officer of Citizen Health, a patient-led platform helping families take control of their health data.
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How These Three AI Healthcare Companies Are Restoring The Human Touch
March 4, 2026
Alison Coleman
See moreKey to Citizen Health’s impact is personalization. For rare disease patients, generic AI support isn’t enough. The more complex the condition, the more essential context becomes. Meaningful guidance demands a complete picture of an individual’s care journey, clinical history, home life, school, insurance, and beyond. With Citizen Health, each patient’s medical record serves as the platform of truth, augmented with community knowledge, allowing families to understand patterns and make informed next steps.
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