The Angelman Syndrome Foundation is partnering with startup Citizen Health to offer families access to Ari, an artificial intelligence-powered advocate designed for rare disease communities.
ASF is among the first foundations to put the AI advocate tool directly in the hands of its families, according to the organization.
"The fundamental part of ASF is how do we make your journey easier? How do we help you day to day? Because the diagnosis that you've been handed is already extremely hard, both physically, mentally, and in so many different ways. And so, if there are things that we can do at the Foundation to help you ease that burden at all, we're so on board for it. This partnership was just a real natural alignment for us in our mission," said Amanda Moore, CEO of the Angelman Syndrome Foundation, in an interview, offering Fierce Healthcare an early look at the partnership.
ASF families will get access to Ari at the 2026 ASF Family Conference, held July 30 through August 1 in Denver. The two organizations will then begin a phased rollout of Ari, starting with families in the United States and expanding to ASF's global community in waves.
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 become available to families, the value of organized, real-world data also increases.
Moore's son Jackson was diagnosed with Angelman syndrome in 2016. "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," she said.
The Angelman Syndrome Foundation 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 unlocked more than $200 million in additional funding, and ASF-backed science laid the groundwork for many of the therapeutic approaches now in development, according to the organization.
Citizen Health, launched in late 2023, is an AI-powered technology platform designed to help patients and families navigate and manage rare and complex conditions. It aggregates medical records, assists with care coordination, and transforms consented patient data into regulatory-grade real-world evidence to accelerate medical research and drug development.
The company's platform is free for patients and families to use. Revenue is generated by licensing de-identified, aggregated real-world evidence and datasets to pharmaceutical companies. Citizen Health raised $30 million in August 2025 to build out its AI capabilities.
Tech entrepreneur Farid Vij, previously a co-founder of the health tech platform Ciitizen launched the startup with Nasha Fitter, a rare disease advocate and entrepreneur. Fitter’s youngest daughter was diagnosed with the rare disease FOXG1 syndrome, and she quickly learned there was little to no information about the disease or how to navigate it, and also found that access to rich clinical information was the biggest gap in advancing research for a cure.
"Citizen was really born out of my need of two things: One is having better tools for families day-to-day. The caregiver burden is so intense and having tools that help us just organize things and stay on top of things, and after AI GPT technologies came out, I think the world really opened up with what we could do. The second part of Citizen is helping to advance drug development in a way that, again, does not put burden on caregivers," Fitter, who serves as chief business officer, told Fierce Healthcare.
The company’s platform combines AI, community and longitudinal health data to help patients and families manage rare and complex diseases.
Citizen Health developed Ari to help families and caregivers by taking on administrative work to interpret medical records, track symptoms, manage appointments and connect to the next best step in their health journey, according to the company. The company pulls in curated information and resources for rare disease foundations.
There are about 100 advocacy groups on the Citizen Health platform representing 350 rare diseases. The platform contains 10,000 patients' medical records, Fitter said.
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, according to the company.
The AI advocate also connects everyday care to the research pipeline. Families can choose to share de-identified insights from their medical records to speed research and therapies. Citizen's platform gives patient advocacy groups a better way to organize their data and pharmaceutical companies a better way to utilize that data for drug discovery and trials, Citizen executives said.
The partnership aims to give Angelman syndrome families access to AI tools tailored to their complex healthcare needs, addressing a long-standing gap in technology support for rare disease communities.
Citizen Health launched a closed beta for Ari, Fitter said. "We're bringing on advocacy group by advocacy group. We want to make sure it's a very stable and helpful tool before we scale it. Right now, we have close to 2,000 patients and families using Ari."
Moore has been beta-testing Ari and said the technology has been a breakthrough, helping to provide trusted, clinician-backed information during a medical crisis and offering both emotional support and immediate access to relevant resources. Often, patients are urgently seeking out information in real-time and will turn to the internet or Facebook groups.
"It's going to give families the power to have all of their information in one place. I know when I have to go check Jackson's records, I have to go to four different MyCharts because he sees specialists all over the place. Right now, I have one place I can go, but then I can also ask questions and I'm able to have that conversation and get that correct information," Moore said.
Citizen Health has a quality assurance process and continuous clinical reviews to ensure the information Ari provides is accurate, Fitter noted.
Advances with AI have changed the game for patient engagement, making it more proactive, Fitter noted.
"Before we were able to offer families back their medical records, and that's valuable, and we'd be able to extract data and give analysis back, but that really only goes so far. Whereas now with AI, with Ari, it's like a teammate, so it has all the medical record information, it knows everything about the patient and it's able to be proactive and listen," she said.