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Angelman Syndrome Foundation and Citizen Health Partner to Put Advanced AI to Work for Every Angelman Family
Citizen Health's AI advocate for rare disease families debuts for the Angelman community at the 2026 ASF Family Conference
SAN FRANCISCO and DENVER, July 29, 2026 (GLOBE NEWSWIRE) -- The Angelman Syndrome Foundation (ASF) and Citizen Health today announced a partnership to bring Ari, Citizen Health's AI advocate for rare disease families, to the Angelman community. ASF is among the first foundations to put this technology directly in the hands of its families, who will get access to Ari at the 2026 ASF Family Conference, held July 30 through August 1 at the Gaylord Rockies Resort near Denver, Colorado.
For too long, rare disease families have been an afterthought in health technology, left to manage extraordinarily complex medical lives with tools built for everyone but them. This partnership starts from a different belief: that the roughly 500,000 people suffering from Angelman syndrome globally deserve the best technology available, working for them around the clock.
“Rare disease families deserve the best technology at their fingertips, not whatever gets built for everyone else first," said Nasha Fitter, Co-Founder and Chief Business Officer of Citizen Health. "Ari does the work that families have had to do alone for years, and it does it proactively. We are honored that ASF, one of the largest and most research-driven communities in rare disease, is bringing the technology to families who can truly benefit from it."
Ari is a proactive advocate that takes on the relentless administrative work of rare disease management. For an Angelman family, that means Ari tracks down and organizes the medical records scattered across neurologists, geneticists, and therapists. It keeps a running history of seizures and symptoms entered seamlessly via voice to text by the caregiver, and watches for clinical trials and research as they open, flagging what is relevant to that specific child. Much of this happens in the background, and Ari reaches out by text before a parent has to ask.
The result is real relief. Fewer hours on hold with health systems, less paperwork at the kitchen table, and more time and attention for the child at the center of it all. For families who choose to share de-identified insights from their medical records, the same securely organized data also helps speed the research and therapies the Angelman community is working toward.
"After my son Jackson was diagnosed with Angelman syndrome in 2016, I saw firsthand how little support exists for families navigating this alone," said Amanda Moore, Chief Executive Officer of the Angelman Syndrome Foundation. "As a mom, I know how much of this work falls on parents, and how little of it technology has ever helped with. Ari takes that load off. It keeps our families organized and informed, and for those who want it, it opens a real door to the research that will change our children's lives."
Why ASF and Citizen Health
ASF is one of the leading research funders in the field, having invested more than $18 million in Angelman syndrome research at universities and medical centers worldwide. That early investment has helped unlock more than $200 million in additional funding, and ASF-backed science laid the groundwork for many of the therapeutic approaches now in development.
Angelman syndrome is a rare neurodevelopmental disorder that affects roughly one in 15,000 people, with seizures among its defining challenges. As a growing number of investigational therapies advance toward families, the value of organized, real-world data has never been higher. Ari connects everyday care to that research pipeline. As families use it, they build the kind of data that helps move therapies forward, entirely on their own terms. Sharing data for research is always optional, and families control their own information and decide whether and how it is used.
Available at the 2026 ASF Family Conference
Citizen Health will exhibit at the conference, and Nasha Fitter will present Ari during the opening session, joined by members of the Angelman community who will share how they are already using it. Following the conference, the two organizations will begin a phased rollout of Ari, starting with families in the United States and expanding to ASF's global community in waves, so each group has a reliable, well-supported experience as availability grows.
Families who want to learn more can visit Citizen Health's booth at the conference or sign up at citizen.health/angelman.
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About the Angelman Syndrome Foundation
The Angelman Syndrome Foundation is dedicated to advancing the awareness and treatment of Angelman syndrome through education, information, research, and support for individuals with Angelman syndrome and their families. ASF has invested more than $18 million in research, provides clinical care for families, and family support programs, and brings families together through its Family Conference and Angelman Strong events. Learn more at angelman.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.
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Media Contacts
Citizen Health
Amanda Wells
awells@sloanepr.com
Angelman Syndrome Foundation
Amy Friel
webmaster@angelman.org
800.432.6435