Angelman Syndrome Foundation and Citizen Health Partner to Bring AI Advocate Ari to Angelman Families
核心洞察
The Angelman Syndrome Foundation (搜索) (ASF) and Citizen Health (搜索) announced a partnership to bring Ari (搜索), an AI advocate for rare disease families, to the Angelman community.
Families will gain access to Ari (搜索) at the 2026 ASF Family Conference, held July 30 through August 1 near Denver, Colorado.
Ari (搜索) organizes scattered medical records, tracks seizures and symptoms, and proactively flags relevant clinical trials and research for each child.
The Angelman Syndrome Foundation (搜索) (ASF) and Citizen Health (搜索) have announced a partnership to bring Ari (搜索), Citizen Health's AI advocate for rare disease families, directly to the Angelman community. ASF is among the first foundations to put this technology in the hands of its families, who will receive access to Ari at the 2026 ASF Family Conference, held July 30 through August 1 at the Gaylord Rockies Resort near Denver, Colorado.
The partnership reflects a shift in how rare disease families are served by health technology. "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 (搜索). "Ari (搜索) does the work that families have had to do alone for years, and it does it proactively."
How Ari Supports Angelman Families
Ari (搜索) is a proactive advocate that takes on the administrative burden of rare disease management. For an Angelman family, Ari tracks down and organizes medical records scattered across neurologists, geneticists, and therapists. It maintains 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 work happens in the background, with Ari reaching out by text before a parent has to ask.
The result, according to the organizations, is meaningful 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 (搜索) 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 (搜索). "As a mom, I know how much of this work falls on parents, and how little of it technology has ever helped with. Ari (搜索) 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."
The Research Context
ASF is one of the leading research funders in the field, having invested more than $18 million in Angelman syndrome (搜索) 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 (搜索) 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 (搜索) 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.
Rollout and Availability
Citizen Health (搜索) will exhibit at the conference, and Nasha Fitter will present Ari (搜索) 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.