International Rett Syndrome Foundation and Citizen Health partner to bring AI teammate Ari to Rett Syndrome community. A practical new tool helps families organize records, track symptoms, prepare for appointments, and manage more of the work around Rett care. Our families carry an enormous amount that nobody sees. [Ari] keeps families organized and informed, and gives them another tool to help navigate the complexity of Rett care throughout the journey." - Dominique Pichard, MD, MS, IRSF Chief Scientific & Medical Officer 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. 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, [email protected] International Rett Syndrome Foundation, Meghan Cordeiro, [email protected] Meghan Cordeiro International Rett Syndrome Foundation email us here Legal Disclaimer: EIN Presswire provides this news content "as is" without warranty of any kind. We do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. 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Global Genes has partnered with Citizen Health to provide the technology platform for RARE-X, its rare disease data collection programme. RARE-X serves over 10,000 participants across 135 patient advocacy communities, with roughly 38% based outside the US. The partnership combines RARE-X's rare disease instrument library with Citizen Health's ability to retrieve medical records from more than 4,000 US institutions. RARE-X participants will gain access to Ari, Citizen Health's AI assistant, which gathers medical records, tracks symptoms, and handles insurance and administrative tasks via text. The collaboration aims to reduce the research burden on families whilst collecting more comprehensive data. Caregivers of children with rare diseases provide an average of 53 hours of care weekly, compared with 30 hours for caregivers generally. When de-identified data is licensed for research, revenue returns to patient advocacy groups and participants. Citizen Health has already distributed over $1 million to rare disease communities.

Global Genes partners with Citizen Health to power RARE-X. RARE-X continues as an independent research platform and expands its capabilities to support research through medical record data collection and medical management for families using Ari, Citizen Health's AI teammate. September 08, 2026 09:00 ET | Source: Citizen Health SAN FRANCISCO and BOSTON, Sept. 08, 2026 (GLOBE NEWSWIRE) - Global Genes has entered a strategic partnership with Citizen Health to provide the technology behind RARE-X, its rare disease data collection program. RARE-X serves more than 10,000 participants in collaboration with 135 patient advocacy communities, with roughly 38 percent of participants residing outside the United States. The selection will be announced live tomorrow at Global Genes' RARE Drug Development Symposium in Boston. "We both want the same two things at once: to make a patient's day easier now, and to get better treatments to them faster." RARE-X will continue to operate as its own fully independent research platform under Global Genes, which continues to set the RARE-X research agenda and govern the data. The move to Citizen Health's platform opens new opportunities to collect and connect data across more rare disease communities, while providing immediate value to patients. RARE-X has spent years building an instrument library specifically for rare diseases, capturing symptom severity, progression and burden of illness in structured form, including validated instruments and custom surveys. Citizen Health can retrieve participants' medical records from more than 4,000 U.S. institutions on their behalf and organize them into datasets averaging over 10 years of longitudinal information, including genetics, full clinic notes, and imaging. These two datasets - the lived experience patients report over time alongside clinical data - build a far more comprehensive picture to inform research and drug development. RARE-X participants will also have the option to use Ari, Citizen Health's AI teammate. Ari gathers medical records from every provider and works over text, turning daily symptoms into trends, prepping families for appointments, finding public benefits they qualify for, and taking on insurance denials and school paperwork. Ari is an added benefit immediately available to all RARE-X participants. Participants control their information across both platforms and can opt in or out of data sharing for research at any time. The partnership is also a commitment to change what research asks of families. Caregivers of a child with a rare disease provide an average of 53 hours of care a week, compared with 30 hours for caregivers of children generally according to a study by Global Genes and the National Alliance for Caregiving. Research participation asks them for more on top of that, some of it involves describing what their own clinicians may have already documented. The families with the most to contribute are often the least able to, due to the burden placed on them through traditional research methods. "RARE-X was built with our patient advocacy partners, and that commitment continues with this partnership. We've looked hard at what our communities need. Comprehensive data bringing together patient-reported experience and clinical records will accelerate urgently needed progress in rare diseases. We are dedicated to partnering with communities to collect this critical data while making it easier for participants to provide it. Citizen Health is a unique and forward-looking partner rethinking how data gets collected and has built a product specifically for the rare disease community," said Charlene Son Rigby, Chief Executive Officer, Global Genes. Over time, the aim is to stop asking participants to re-enter what a medical record already contains and instead put that time to augment it: capturing what the record cannot and correcting what it gets wrong or leaves out. And by using standardized, research-grade measures, RARE-X enables the robust collection of regulatory-grade patient experience data needed for clinical trials and beyond. This is the first of several changes the two organizations intend to make to how rare disease research is conducted. "Global Genes has built the connective tissue of this field, with more than 90 organizations across thousands of diseases that would otherwise be working alone. We bring the technology and a commitment to building something families will actually want to use. We both want the same two things at once: to make a patient's day easier now, and to get better treatments to them faster. Those tend to be treated as separate goals. They are not," said Farid Vij, Co-Founder and Chief Executive Officer, Citizen Health. For researchers, cohorts can be defined by diagnosis, genetic variant, symptom profile, treatment history and consent status in a single query rather than assembled across disconnected sources. And when de-identified data is licensed for research, a share of the revenue returns to the patient advocacy groups and patients who generated it. Citizen Health has already distributed more than $1 million to rare disease communities. Advocacy groups and patients have long supplied the data that makes rare disease research possible while capturing none of its value. Advocacy organizations that want to learn more can visit citizen.health/rarex or globalgenes.org/rarex-citizen/. About Global Genes Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients, their families and disease communities globally. For nearly two decades, we've equipped rare disease patients and advocates with tools, training and support - to connect patients with needed resources, activate communities and advance research. Global Genes serves the more than 400 million people around the globe, and the nearly one in 10 Americans affected by rare diseases. With over 890 patient advocacy group members in our Global Advocacy Alliance, we work with patient advocates, industry partners and academia to build vital ecosystems to progress critical work in rare disease. Learn more at globalgenes.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, gathers medical records from every provider and takes on the symptoms, appointments, insurance, benefits, and school paperwork a rare disease diagnosis puts on a family, all by text. Citizen Health is headquartered in San Francisco, California. Learn more at citizen.health. Media Contacts