Citizen Health

18/06/2026

When Nasha Fitter co-founded Citizen Health, there were no therapies and no roadmap for families like hers. Today, we support over 8,000 patients and 100+ advocacy groups navigating rare disease care and the natural history study work we supported is advancing a FOXG1 gene therapy into clinical trials.

Nasha shared the full story, including the hardest parts, on Trust Me Mom. If you’re a parent of a medically complex child, this interview will hit home. Links to listen in the comments

28/05/2026

"The hardest part isn't the physical stuff. You get used to that.

It's the emotional side. It's the loss of the dream — you want the best thing for your kiddo, and for yourself, and for your parents. And I don't know about you, but for me... it's just never gone away."

Rohan Seth sat down with Nasha Fitter for the latest 🎙️Citizen Health Conversation🎙️ — bringing rare disease leaders into our HQ to share stories and perspectives with our team and community.

Rohan is dad to Lydia, who has a rare KCNQ2 mutation. He founded Lydian Accelerator to accelerate rare disease treatment for Lydia and others. Rohan also co-founded the tech platform Clubhouse and is an investor in Citizen Health.

Thank you for sharing your story, and for the inspiration your work provides. 💜

Learn more at www.lydianaccelerator.org

26/05/2026

Content note: this third and final clip from our Citizen Health Voices discussion includes discussion of a very difficult period in Sumaira's journey.
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Twelve years later the memories are still raw.💛

After her NMOSD diagnosis, Sumaira Flower spent nine months in diagnostic limbo — relapsing monthly, cycling through treatments, undergoing biopsies and lumbar punctures, all without a confirmed diagnosis.

It was so much that at one point she thought "Actually I'd rather have cancer because we know so much more about cancer."

This is what the diagnostic odyssey looks like for so many rare disease patients — and why the work of organizations like the Sumaira Foundation matters so much.🕯️

Watch the full conversation on YouTube📹: https://youtu.be/Q4VRixmF_6Q

20/05/2026

🩷💛 "My biggest fear is not dying early. My biggest fear is living unhappily."

Three weeks after her NMOSD diagnosis — still in bed rest — Sumaira Ahmed Googled her condition and found a five-year life expectancy.

She couldn't find a support group that felt like her. Everything she saw was depressing. So she figured: if she had to live with this disease, she was going to do it her way.

She started building The Sumaira Foundation weeks after her diagnosis. The goal was simple: find another patient. Share a good story. Make someone feel less alone.

Watch the full conversation between Sumaira and Nasha Fitter on YouTube: https://youtu.be/Q4VRixmF_6Q

Learn more about the Sumaira Foundation: www.sumairafoundation.org

07/05/2026

🌟It was an honor to be joined by Sumaira Ahmed to hear her story of perseverance in the face of neuromyelitis optica spectrum disorder (NMOSD), her amazing story of founding the 🩷💛The Sumaira Foundation💛🩷 in the midst of her treatment odyssey, and the foundation’s work illuminating the darkness of rare neuroimmune disorders.🌟

Nasha Fitter welcomed Sumaira in the first of our series of 🎙️Citizen Health Conversations🎙️ — bringing rare disease community leaders into our HQ to share stories and perspectives with our community.

Learn more about the Sumaira Foundation and its mission of Illuminating rare neuroimmune disorders ➡️ www.sumairafoundation.org

Sign up for Citizen Health’s free platform to ease the care navigation burden on rare disease patients and caregivers while advancing research ➡️ www.citizen.health

See the full conversation on YouTube: www.youtube.com/watch?v=Q4VRixmF_6Q

17/04/2026

If you haven't heard of CNBC Cures, it's pretty amazing. Rooted in the personal experience of journalist Becky Quick as a rare disease parent, they have dedicated substantial new journalistic resources to all aspects of the rare disease space.

Last week they profiled our co-founder Nasha Fitter — and the journey from her daughter's diagnosis to building an AI advocate for rare disease families everywhere.

The one number to take away from the piece isn’t how many millions of dollars Citizen Health has raised, it’s 53.

That's how many hours each week the average parent of a child with a rare disease spends navigating care — above and beyond everything ordinary parenting already asks of you. And not counting the stress and anxiety and fear.

As Nasha built Citizen and the FOXG1 Research Foundation, the goal has always been to enable better treatments while also making the day-to-day of caregiving easier.

And now it’s all happening”
—Data from the Citizen Health community helped steer the foundation’s upcoming clinical trial, including an FDA decision that could speed up the outcome by years.
—The Citizen Health App is helping families walk into doctor's appointments with confidence and stay present.

"The greatest accomplishment is that the next patient who is just getting diagnosed is going to have such an easier life."

Read the full story at:

AI-powered healthcare startup Citizen Health is using the technology to focus on rare disease, helping manage patient lives as well as advance treatments.

14/04/2026

"We're always told as a parent to bring an advocate to write things down. This is amazing"

Medical appointments are always too short, especially for medically complex kiddos. 💙

Your attention should be on listening and asking questions — not scrambling to write everything down. 📋

The appointment recording and summary feature in the Citizen Health app is built so you can stay present — listening, asking questions — instead of furiously taking notes.

Shelley from SCN8A The Cute Syndrome Foundation says it's "amazing" to have one less thing to worry about at the doctor. Not having to be the notetaker, on top of being the caregiver, makes medical visits a little less overwhelming.

Just inform your provider, tap a button, and walk out with a clear summary and next steps.

Try it today → www.citizen.health