The Angelman Syndrome Foundation has partnered with startup Citizen Health to provide families with access to Ari, an artificial intelligence-powered advocate designed for the rare disease community.
The organization said ASF was one of the first foundations to bring AI advocacy tools directly to families.
“A fundamental part of ASF is how we make your journey easier. So if there’s anything we can do at the Foundation to help ease that burden a little bit, we’re happy to do it. This partnership was a really natural alignment in our mission,” said Amanda Moore, CEO of the Angelman Syndrome Foundation. In an interview, we provided Fierce Healthcare with information about the early stages of the partnership.
ASF families will have access to Ari at the 2026 ASF Family Conference in Denver from July 30 to August 1. The organizations will then begin a phased rollout of Ari, starting with families in the United States and gradually expanding to ASF’s global community.
Angelman syndrome is a rare neurodevelopmental disorder that affects approximately 1 in 15,000 people, and one of its defining challenges is seizures. As the number of investigational drugs available to families increases, so does the value of organized real-world data.
Moore’s son Jackson was diagnosed with Angelman syndrome in 2016. “As a mother, I know that much of this work falls on parents and that technology has not helped so far. Ali helps ease that burden,” she said.
The Angelman Syndrome Foundation is one of the leading research funders in this field and has invested more than $18 million in Angelman syndrome research at universities and medical centers around the world. The group says this initial investment has secured more than $200 million in additional funding and that the science backed by ASF has laid the foundation for many treatments currently in development.
Launched in late 2023, Citizen Health is an AI-powered technology platform designed to help patients and families address and manage rare and complex conditions. Aggregate medical records, support care coordination, and transform consented patient data into regulatory-grade, real-world evidence to accelerate medical research and drug development.
The company’s platform is free to patients and families. Revenue is generated by licensing anonymized and aggregated real-world evidence and datasets to pharmaceutical companies. Citizen Health raised $30 million in August 2025 to build AI capabilities.
Technology entrepreneur Farid Vij, previously co-founder of health tech platform Citizen, co-founded the startup with rare disease advocate and entrepreneur Nasha Fitter. Fitter’s youngest daughter was diagnosed with FOXG1 syndrome, a rare disease. She quickly learned that there was little to no information about the disease or how to treat it, and that access to a wealth of clinical information was the biggest gap in research for a cure.
“Citizen was actually born out of two needs of mine. One is to give families better tools on a daily basis. The burden on caregivers is huge, and they need tools to help them stay organized and on top of things. I think since AI GPT technology has come out, it’s really opened up the world to what we can do. Citizen’s 2 The second part is again to help drive drug development in a way that doesn’t put a burden on caregivers,” CEO Fitter told Fierce. healthcare.
The company’s platform combines AI, community, and longitudinal health data to help patients and families manage rare and complex diseases.
According to the company, Citizen Health developed Ari to take on administrative tasks such as interpreting medical records, tracking symptoms, and managing appointments to support families and caregivers and connect them with the next best steps to health. The company collects selected information and resources for the Rare Disease Foundation.
Smartphone with screenshot of Citizen Health app
Citizen Health’s AI-powered patient platform (Citizen Health)
The Citizen Health platform has approximately 100 advocacy groups representing 350 rare diseases. Fitter said the platform contains medical records for 10,000 patients.
For the Angelmans, that means Ali tracking and organizing medical records scattered among neurologists, geneticists and therapists. The company says it saves a history of seizures and symptoms entered seamlessly from voice to text by caregivers, monitors clinical trials and studies as they begin, and flags those that are relevant to that particular child.
AI advocates also connect everyday care to research pipelines. Families can choose to share anonymized insights from their medical records to expedite research and treatment. Citizen’s platform gives patient advocacy groups a better way to organize their data and gives pharmaceutical companies a better way to use that data for drug discovery and clinical trials, Citizen executives said.
This partnership aims to give Angelman syndrome families access to AI tools tailored to their complex medical needs and address a long-standing gap in technical support for the rare disease community.
Fitter said Citizen Health has started a closed beta version of Ari. “We’re working on a support group basis. We want to make sure this is a very stable and useful tool before we scale it up. Nearly 2,000 patients and families are using Ari right now.”
Moore has been beta testing Ari and said the technology is groundbreaking and will help provide trusted, clinician-assisted information during a medical crisis, providing both emotional support and immediate access to relevant resources. Patients often have an urgent need for real-time information and turn to the internet or Facebook groups.
“This will allow the family to have all of their information in one place. I know that when I need to check Mr. Jackson’s records, I have to go to four different MyCharts because he’s seen a lot of different specialists. Right now, there’s one place I can go, but I can also ask questions and have a conversation and get the right information,” Moore said.
Citizen Health has quality assurance processes and ongoing clinical reviews to ensure the information provided by Ari is accurate, Fitter said.
Advances in AI have changed the way we interact with patients, making them more proactive, Fitter said.
“Before, we could provide medical records to families, which was valuable, and we could extract data and return analysis, but that can only go so far. Whereas now with AI, Ari is like a teammate, she has all the medical record information, she knows everything about the patient, and she can actively listen,” she said.
