Momtech Entrepreneur Develops Agent AI for Families with Rare Diseases

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When Nasha Fitter’s youngest daughter was diagnosed with FOXG1 syndrome, a rare genetic neurodevelopmental disorder, in 2017, she faced a challenge that many in the rare disease community are unfortunately familiar with. That meant there was little or no public information about the disease or how to treat it.

“Nothing was really being done,” Fitter said. “Getting daily answers to my questions and problems I was facing was really unstructured and random. I basically went on Facebook and expected someone to answer my questions.”

Fitter was told at the time that there was no cure for the syndrome, no ongoing research, and no real roadmap for what would happen next for her daughter. To tackle this problem head-on, she co-founded the FOXG1 Research Foundation, which is working on treatments.

But Fitter, a technology entrepreneur, saw the potential to advance the way patients with rare diseases receive treatment and accelerate the discovery of cures.

Working with fellow tech entrepreneur Farid Vij, the two launched Citizen Health in 2023 with the goal of building what Vij calls “AI champions” for the rare disease community.

“The biggest benefit for rare disease patients is having an advocate in their corner,” Vij said.

Often, due to the lack of information and resources available regarding a particular rare disease, that responsibility falls on parents and loved ones.

“Thousands of families will have reasons why they can’t take no for an answer, and will try to find another doctor, start a foundation, or become a scientist themselves and build a gene therapy program,” he said. “But most people can’t afford it or don’t know how to do it, and it’s really hard to democratize it.”

AI and LLM are rapidly changing the healthcare industry, with more people turning to these tools for health advice and guidance to better understand their conditions, test results, questions to ask their doctors, and treatments.

Vij said the development is great for people looking for information about common symptoms and general health care. But for many patients with rare diseases, he said, “the model has nothing to guide us because there are no studies, there are no approved treatments, and even the top experts see only a small number of patients.” After all, that’s why many rare disease patients and their families turn to Facebook and other groups where they don’t even know if the information they’re receiving is relevant.

This is the problem Citizen Health is solving by building one of the largest rare patient data networks of its kind. The AI-powered platform works with patients and rare disease advocacy groups to build communities across a range of conditions. Use medical records, genetic information, and other patient-reported experiences to create datasets where those same patients, their families, or clinicians can ask questions and find answers. Citizen Health also collects and organizes data from consenting patients and provides access to researchers so they can advance drug development and treatments without further burdening the rare disease community.

Citizen Health says more than 8,000 rare disease patients have joined the platform to date, across more than 350 diseases. Additionally, more than 16 pharmaceutical companies are using the data to advance treatments.

Using Citizen Health is free for patients, who can opt-in to give researchers access to their data. Vij said 98.3% of patients currently choose to share. If researchers want to access that data for commercial purposes, they pay a fee to Citizen Health, which also shares some of it with patients.

“We were able to develop these treatments based on what patients actually needed and reduce the time to market by 30% to 50%,” said Vij. “This is our dual mission: to use this aggregated data to help patients every day, and to use that same data to advance research and bring treatments to market faster.”

Since its founding in 2023, the company has raised $44 million, including a $30 million Series A funding round in August 2025 led by 8VC. Other backers include Headline, Transformation Capital, and the Chan Zuckerberg Initiative.

Now, Citizen Health is taking its platform a step further, deploying agent AI built specifically for rare disease patients to help coordinate patient appointments, process insurance claims, alert you when something needs attention in your medical record, and connect patients with similar patients and related clinical trials.

“For rare diseases, parents spend an average of 53 hours a week caring for their children, above and beyond the normal parenting duties everyone has to do,” Vij said. “So not only will a lot of that time be given back, but it will also lead to better outcomes for patients because we will be learning from the collective wisdom of our community.”

Fitter, who is not only the company’s chief business officer but is also using the tools to help care for her daughter, said this kind of tools and access can be critical for rare disease patients and their families who are struggling to find the right care and a roadmap to follow.

“This is a game-changer for individual patients, allowing them to receive better care and make better decisions every day,” she says. “For our foundation, without Citizen, we would not have administered our first patient this year.”

In his foundation’s case, Fitter said data from Citizen Health helped guide the ultimate goal of treatment from seizures to movement disorders, a decision he said was made after he was able to analyze medical data from other FOXG1 syndrome patients. The foundation recently held a Type D meeting with the FDA, which allowed it to use patient natural history data from medical records as a placebo control group, allowing it to skip the Phase 3 trial and the placebo, saving it about $80 million, according to Fitter.

“The biggest accomplishment is that the next newly diagnosed patient will have such an easy life because of the work we’ve done,” she said.