Mom tech entrepreneur creating agentic AI for rare-disease families

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When Nasha Fitter’s youngest daughter was diagnosed with FOXG1 syndrome in 2017, a rare genetic neurodevelopmental disorder, she faced a challenge that many in the rare disease community know unfortunately too well: little to no public information about the disease or how to navigate it.

“There was really nothing being done,” Fitter said. “Just getting day-to-day answers to my questions and the issues I was facing was really unsystematic and random … it was basically going to Facebook and hoping someone would answer my question.”

Fitter was told at that time that there was no treatment for the syndrome, no research that was underway, and no real roadmap for what might come next for her daughter. To tackle that head on, she co-founded the FOXG1 Research Foundation to work towards a cure.

But Fitter, a technology entrepreneur, also saw an opportunity to advance how rare disease patients receive care that could also accelerate finding cures.

Working with fellow technology entrepreneur Farid Vij, the two launched Citizen Health in 2023, aiming to build what Vij calls an “AI advocate” for the rare disease community.

“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.

Often, due to the lack of information and resources available around specific rare diseases, that duty falls on a parent or a loved one.

“Thousands of families have a reason to not take no for an answer, so they will try to find the next doctor, they will start a foundation, or they’ll try to become scientists themselves and build gene therapy programs,” he said. “But most people can’t afford to do that, or they don’t know how to do that, and it’s really hard to democratize that.”

AI and LLMs are rapidly changing the healthcare industry, and more people are now turning to these tools for advice and guidance when it comes to their health, whether that’s to better understand their conditions and test results, questions they should be asking their doctor or how they should seek treatment.

Vij said this development has been great for people seeking out information about common conditions and general health care. But for many rare disease patients, “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,” he said. Ultimately, that’s what causes many rare disease patients and their families to turn to Facebook and other groups where they’re not even sure if the information they’re receiving is relevant.

That is a problem that Citizen Health is trying to solve, 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 for different conditions, using medical records, genetic information and other patient-reported experiences to create a dataset that can be queried by those same patients, their families or clinicians to find answers. Citizen Health also collects and organizes data from consenting patients, providing access to researchers so that they can advance drug development and treatments without putting further burden on those rare disease communities.

To date, there are more than 8,000 rare disease patients on the platform across more than 350 diseases, Citizen Health said. In addition, there are more than 16 pharmaceutical companies using that data to advance treatments.

Using Citizen Health is free for patients, and they can opt-in to having their data accessible to researchers – Vij said 98.3% of patients choose to share currently. If a researcher wants to access that data for commercial purposes, they pay Citizen Health, which also shares a percentage of that with the patient.

“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%,” Vij said. “That’s our dual mission, to use this aggregate data to help patients day-to-day, and then on the other side use that same data to drive research so that we can get therapies to market faster.”

The company has raised $44 million since its 2023 launch, 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, introducing agentic AI built specifically for rare disease patients, helping them schedule appointments, navigate insurance appeals, alerting them when something in their medical records warrants attention, and connecting them with similar patients and relevant clinical trials.

“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,” Vij said. “So, it’s giving a lot of those hours back, but also driving much better outcomes for patients because you’re learning from the collective wisdom of the community.”

Fitter, who not only is the company’s chief business officer but uses it to help with her daughter’s care, said these types of tools and access can be critical for rare disease patients and their families struggling with finding the right care or roadmap to follow.

“It’s a game changer for the individual patient, getting better care and making better decisions day-to-day,” she said. “For our foundation, if we didn’t have Citizen we would not be dosing our first patient this year.”

Fitter said in the case of her foundation, the data from Citizen Health helped steer the endpoint of its treatments from seizures to movement disorders, a decision that was made after being able to analyze the medical data of other patients with FOXG1 syndrome. The foundation recently had its type D meeting with the FDA and was allowed to use patient natural history data based on their medical records as the placebo control arm, which allowed it to skip a phase three trial and a placebo, which Fitter said saved about $80 million.

“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,” she said.