A practical new tool helps families organize records, track symptoms, prepare for appointments, and manage more of the work around Rett care.
CINCINNATI, OH, UNITED STATES, September 10, 2026 /EINPresswire.com/ — The International Rett Syndrome Foundation (IRSF) and Citizen Health have partnered to bring Ari, Citizen Health’s AI teammate for rare disease families, to the Rett syndrome community. Ari is currently available in beta, giving Rett families early access to the tool and an opportunity to help shape its continued development. Families began using Ari following the partnership’s launch at IRSF’s ASCEND 2026 Rett Syndrome National Summit earlier this summer. Together, IRSF and Citizen Health aim to build on that early experience to expand Ari’s use and value to the community.
Rett syndrome is a genetic disorder caused by a pathogenic variant in the MECP2 gene, with symptoms typically becoming apparent between 6 and 18 months of age as a child begins to miss developmental milestones or lose abilities they had already gained. It affects girls and boys and impacts nearly every aspect of an individual’s life, including communication, purposeful hand use, movement, eating, breathing, sleep, and other aspects of health.
For families, that complexity can mean keeping track of years of symptoms, medication changes, specialist visits, and observations that may be important to a loved one’s care. Parents and caregivers often become the keepers of that history, piecing together information from multiple clinics, notes, and memory, and carrying it from one appointment to the next. This partnership starts there: making the journey easier for families and caregivers.
“Every rare disease parent becomes an archivist, and nobody chooses it,” said Nasha Fitter, Co-Founder and Chief Business Officer of Citizen Health. “You are the one who remembers what changed and when, because often no one else can tell the story. Ari was built to carry that, so remembering is not one more thing a parent has to do alone at eleven at night. IRSF has spent decades standing behind these families, and we are glad to add something practical and supportive to what they already do.”
Ari gathers medical records from across the specialist teams a Rett family might see and holds them in one place. A caregiver can log a seizure, a feeding problem, or a rough night by speaking into their phone, and Ari files it into a running history of that individual, ready when the next appointment arrives. It can help draft messages to the care team, work through the insurance paperwork and school documentation, and watch for research and clinical trials as they open, flagging what is relevant to that individual.
What that buys back is time and attention. Fewer evenings reconstructing a timeline from memory, fewer hours on hold, a clearer message to bring to the next appointment.
“Our families carry an enormous amount that nobody sees. They are the historians, the schedulers, and the advocates, usually all at once, and very little of the technology they have been handed has helped with any of it,” said Dr. Dominique Pichard, IRSF’s Chief Scientific and Medical Officer and mother of a daughter with Rett syndrome. “What drew us to Ari is that it takes real work off a parent’s plate. It keeps families organized and informed, and gives them another tool to help navigate the complexity of Rett care throughout the journey.”
Why this partnership now
IRSF has an important dual mission: advancing the research that will lead to treatments and cures, while supporting the families living with Rett syndrome today across the entire Rett journey. This partnership reflects that commitment by giving families a more dynamic way to manage the day-to-day work of care. Ari can help families make sense of medical records, track changes over time, prepare for appointments, draft messages and insurance appeals, and connect with information relevant to their individual needs. By partnering with Citizen Health, IRSF is bringing the latest AI capabilities into a tool purpose-built for the complex realities of rare disease care.
Available now for the IRSF community
Families who joined at ASCEND 2026 are already using Ari, and access is now open to all IRSF community members. As Ari continues in beta, families who use it during this early period will have the opportunity to provide feedback and help shape its continued development.
Families who want to learn more can sign up at citizen.health/irsf.
About the International Rett Syndrome Foundation
As the leading Rett syndrome research and advocacy organization, the International Rett Syndrome Foundation (IRSF) builds upon its 40-year commitment to breakthrough discoveries and life-changing advancements in research toward a cure while supporting families affected by Rett syndrome. Through its legacy foundation pioneers, IRSF has invested over $60M in research that helped identify Rett syndrome’s cause, demonstrate that Rett syndrome is reversible in mice, and support the clinical trials that led to the first-ever FDA-approved treatment. IRSF fights for families living with Rett syndrome and a world without it. Learn more at rettsyndrome.org.
About Citizen Health
Citizen Health is building the future of healthcare, starting with rare disease. By combining AI, community, and longitudinal health data, Citizen Health empowers patients to take control of their care and contribute to regulatory-grade data that can accelerate treatments. Its AI teammate, Ari, helps patients and caregivers interpret medical records, track symptoms, learn from peers, manage appointments, and connect to the next best step in their health journey. Citizen Health is headquartered in San Francisco, California. Learn more at citizen.health.
Media Contacts
Citizen Health, Amanda Wells, Sloane PR, awells@sloanepr.com
International Rett Syndrome Foundation, Meghan Cordeiro, mcordeiro@rettsyndrome.org
Meghan Cordeiro
International Rett Syndrome Foundation
email us here
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