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Home»Health»Mom tech entrepreneur creating agentic AI for rare-disease families
AI and Rare Disease with OpenAI CEO of Applications Fidji Simo
Health

Mom tech entrepreneur creating agentic AI for rare-disease families

April 12, 2026No Comments0 Views
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Citizen Well being CEO and Co-founder Farid Vij, and Citizen Well being Chief Enterprise Officer and Co-founder Nasha Fitter.

Citizen Well being

A model of this story first appeared within the CNBC Cures publication. Click on right here to enroll.

When Nasha Fitter’s youngest daughter was recognized with FOXG1 syndrome in 2017, a uncommon genetic neurodevelopmental dysfunction, she confronted a problem that many within the uncommon illness neighborhood know sadly too effectively: little to no public details about the illness or learn how to navigate it.

“There was actually nothing being achieved,” Fitter stated. “Simply getting day-to-day solutions to my questions and the problems I used to be going through was actually unsystematic and random … it was principally going to Fb and hoping somebody would reply my query.”

Fitter was advised at the moment that there was no remedy for the syndrome, no analysis that was underway, and no actual roadmap for what may come subsequent for her daughter. To sort out that head on, she co-founded the FOXG1 Analysis Basis to work in direction of a remedy.

However Fitter, a know-how entrepreneur, additionally noticed a possibility to advance how uncommon illness sufferers obtain care that might additionally speed up discovering cures.

Working with fellow know-how entrepreneur Farid Vij, the 2 launched Citizen Well being in 2023, aiming to construct what Vij calls an “AI advocate” for the uncommon illness neighborhood.

“The only largest factor you could have that may profit you in case you are a affected person with a uncommon illness is an advocate in your nook,” Vij stated.

“1000’s of households have a cause to not take no for a solution, so they may attempt to discover the subsequent physician, they may begin a basis, or they will attempt to change into scientists themselves and construct gene remedy packages,” he stated. “However most individuals cannot afford to do this, or they do not know how to do this, and it is actually onerous to democratize that.”

The influence of AI on the healthcare business

AI and LLMs are quickly altering the healthcare business, and extra folks are actually turning to those instruments for recommendation and steerage in terms of their well being, whether or not that is to raised perceive their situations and check outcomes, questions they need to be asking their physician or how they need to search remedy.

Vij stated this growth has been nice for folks searching for out details about widespread situations and common well being care. However for a lot of uncommon illness sufferers, “there’s been no analysis achieved, there aren’t any authorized therapies, and even the highest skilled has seen just a few sufferers, so there may be nothing for the mannequin to attract from,” he stated. Finally, that is what causes many uncommon illness sufferers and their households to show to Fb and different teams the place they are not even certain if the data they’re receiving is related.

That could be a downside that Citizen Well being is attempting to unravel, constructing one of many largest uncommon affected person information networks of its type. The AI-powered platform works with sufferers and uncommon illness advocacy teams to construct communities for various situations, utilizing medical data, genetic data and different patient-reported experiences to create a dataset that may be queried by those self same sufferers, their households or clinicians to search out solutions. Citizen Well being additionally collects and organizes information from consenting sufferers, offering entry to researchers in order that they’ll advance drug growth and coverings with out placing additional burden on these uncommon illness communities.

To this point, there are greater than 8,000 uncommon illness sufferers on the platform throughout greater than 350 illnesses, Citizen Well being stated. As well as, there are greater than 16 pharmaceutical corporations utilizing that information to advance therapies.

Utilizing Citizen Well being is free for sufferers, they usually can opt-in to having their information accessible to researchers – Vij stated 98.3% of sufferers select to share at present. If a researcher needs to entry that information for industrial functions, they pay Citizen Well being, which additionally shares a proportion of that with the affected person.

“We have been capable of scale back timelines to get these therapies to market the place they’re really constructed on what sufferers want by 30%-50%,” Vij stated. “That is our twin mission, to make use of this combination information to assist sufferers day-to-day, after which on the opposite facet use that very same information to drive analysis in order that we are able to get therapies to market sooner.”

The corporate has raised $44 million since its 2023 launch, together with a $30 million Sequence A funding spherical in August 2025 led by 8VC. Different backers embody Headline, Transformation Capital, and the Chan Zuckerberg Initiative.

Citizen Well being Chief Enterprise Officer and Co-founder Nasha Ritter and her daughter, Amaya, who was recognized with FOXG1 Syndrome, an extremely uncommon neurodevelopmental situation.

Citizen Well being

Utilizing agentic AI to assist uncommon illness sufferers

Now, Citizen Well being is taking its platform a step additional, introducing agentic AI constructed particularly for uncommon illness sufferers, serving to them schedule appointments, navigate insurance coverage appeals, alerting them when one thing of their medical data warrants consideration, and connecting them with related sufferers and related medical trials.

“In uncommon illness, a mum or dad will spend on common 53 hours per week taking care above and past the unusual parenting that anybody might need to do,” Vij stated. “So, it is giving numerous these hours again, but additionally driving significantly better outcomes for sufferers since you’re studying from the collective knowledge of the neighborhood.”

Fitter, who not solely is the corporate’s chief enterprise officer however makes use of it to assist together with her daughter’s care, stated all these instruments and entry may be essential for uncommon illness sufferers and their households combating discovering the suitable care or roadmap to comply with.

“It is a recreation changer for the person affected person, getting higher care and making higher choices day-to-day,” she stated. “For our basis, if we did not have Citizen we might not be dosing our first affected person this 12 months.”

Fitter stated within the case of her basis, the information from Citizen Well being helped steer the endpoint of its therapies from seizures to motion problems, a choice that was made after having the ability to analyze the medical information of different sufferers with FOXG1 syndrome. The inspiration not too long ago had its sort D assembly with the FDA and was allowed to make use of affected person pure historical past information based mostly on their medical data because the placebo management arm, which allowed it to skip a part three trial and a placebo, which Fitter stated saved about $80 million.

“The best accomplishment is that the subsequent affected person that’s simply getting recognized goes to have such a better life based mostly on the work that we have been capable of do,” she stated.

AI and Rare Disease with OpenAI CEO of Applications Fidji Simo
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