In the challenging world of rare diseases, where information is scarce and treatments even scarcer, one mother's personal struggle has sparked a technological revolution aimed at supporting families like hers. Nasha Fitter, a technology entrepreneur and mother of a child with FOXG1 syndrome, co-founded Citizen Health in 2023 alongside fellow entrepreneur Farid Vij. The platform, described by Vij as an "AI advocate" for rare disease patients, is designed to streamline care, connect communities, and accelerate research using artificial intelligence.
Fitter's journey began in 2017 when her youngest daughter was diagnosed with FOXG1 syndrome, a rare genetic neurodevelopmental disorder. At the time, Fitter recalled, "There was really nothing being done." She described the process of seeking answers as "unsystematic and random," often relying on Facebook groups in hopes of getting responses from other families. Told there were no treatments, no ongoing research, and no clear path forward, Fitter took action by co-founding the FOXG1 Research Foundation to pursue a cure.
But Fitter, leveraging her background in technology, envisioned a broader solution. Rare diseases affect millions worldwide, yet they often receive limited attention due to their low prevalence—each impacts fewer than 200,000 people in the U.S., according to federal definitions. For families, this means navigating a fragmented healthcare system without reliable data or expert guidance. "The single biggest thing that you can have that will benefit you if you are a patient with a rare disease is an advocate in your corner," Vij said.
Citizen Health addresses this gap by building one of the largest rare patient data networks available. The AI-powered platform collaborates with patients and advocacy groups to create communities for over 350 specific conditions. It aggregates medical records, genetic information, and patient-reported experiences into a queryable dataset accessible to patients, families, and clinicians. According to the company, more than 8,000 rare disease patients are currently on the platform.
The system also facilitates research by collecting and organizing data from consenting patients, making it available to scientists and pharmaceutical companies. To date, more than 16 pharmaceutical firms are using this data to advance drug development and treatments, reducing the burden on rare disease communities. Use of the platform is free for patients, who can opt-in to share their data with researchers—Vij noted that 98.3% of users choose to do so.
Researchers seeking commercial access pay Citizen Health, with a portion of the revenue shared back to patients. This model, Vij explained, has enabled significant efficiencies: "We've been able to reduce timelines to get these therapies to market where they're actually built on what patients need by 30%-50%." The company's dual mission focuses on immediate patient support through aggregate data while driving faster research outcomes.
Since its launch in 2023, Citizen Health has raised $44 million in funding, including a $30 million Series A round in August 2025 led by 8VC. Other investors include Headline, Transformation Capital, and the Chan Zuckerberg Initiative, signaling strong backing from the venture capital and philanthropic sectors interested in health tech innovations.
Now, the company is expanding with agentic AI features tailored for rare disease management. These tools help patients schedule appointments, navigate insurance appeals, flag issues in medical records, and connect with peers or relevant clinical trials. Vij highlighted the time-intensive nature of caregiving in rare diseases: "In rare disease, a parent will spend on average 53 hours a week taking care above and beyond the ordinary parenting that anyone might have to do."
By automating these tasks, the AI aims to reclaim those hours and improve outcomes through community-sourced wisdom. Fitter, who serves as Citizen Health's chief business officer and uses the platform for her daughter's care, called it "a game changer for the individual patient, getting better care and making better decisions day-to-day."
The impact extends to research foundations like Fitter's own. Without Citizen Health's data, she said, the FOXG1 Research Foundation "would not be dosing our first patient this year." Analyzing aggregated medical data from other FOXG1 patients helped shift the foundation's treatment focus from seizures to movement disorders, a pivotal decision informed by real-world patient insights.
This data-driven approach recently proved invaluable during the foundation's type D meeting with the Food and Drug Administration. Officials allowed the use of patient natural history data from medical records as a placebo control arm, enabling the foundation to skip a phase three trial and avoid administering placebos. Fitter estimated this saved approximately $80 million in development costs.
"The greatest accomplishment is that the next patient that is just getting diagnosed is going to have such an easier life based on the work that we've been able to do," Fitter said. Her story underscores a broader trend in healthcare, where AI and large language models are transforming patient experiences, particularly for common conditions. However, Vij pointed out limitations for rare diseases: "There's been no research done, there are no approved therapies, and even the top expert has seen only a few patients, so there is nothing for the model to draw from."
Instead, families often turn to unverified online forums, where information may not be relevant or accurate. Citizen Health counters this by prioritizing patient-generated data, ensuring relevance and consent. Thousands of families, Vij noted, refuse to accept "no for an answer," starting foundations or pursuing gene therapies themselves—but most lack the resources or knowledge to do so effectively.
The platform's growth reflects increasing interest in AI for underserved health areas. While general AI tools aid in understanding common ailments or preparing doctor questions, rare disease applications remain niche. Citizen Health's approach democratizes advocacy, potentially bridging gaps in a system where parents become de facto experts overnight.
Looking ahead, the company's expansions could reshape rare disease care, from daily management to breakthrough therapies. As more patients join and data accumulates, the promise of faster, more personalized treatments grows. For families like Fitter's, it's not just innovation—it's a lifeline, turning isolation into collective progress.