Citizen Health

Citizen Health Working to improve the lives of the 350+ million people navigating rare and complex conditions

New specialist, new intake form, same story from the beginning. The seizure that started at 14 months. The medication th...
09/04/2026

New specialist, new intake form, same story from the beginning.

The seizure that started at 14 months.

The medication that didn’t work.

The diagnosis that took three years to get.

You recite it from memory, again, in a waiting room, while your child tugs at your sleeve.

One too many times.

Citizen Health was built with patients and caregivers who have sat in that same waiting room.

Your records, your whole history, organized and ready before you ever walk in.

So the next appointment starts where the last one should have ended.

You’ve carried this long enough. Let us carry some of it with you.

If you’re a rare disease parent or caregiver, you already know the job nobody prepared you for: the appeal letters, the ...
09/01/2026

If you’re a rare disease parent or caregiver, you already know the job nobody prepared you for: the appeal letters, the portal logins, the symptom tracking at 2am, explaining your child’s entire history over and over to a new provider.

Meet Ari. Your new AI teammate for the hard, invisible work of rare disease caregiving.

Ari reads and summarizes medical records. Drafts the message to your care team in your voice. Tracks symptoms and flags what’s changing before you have to catch it yourself. Finds clinical trials. Fills out the forms. Remembers your full history so you’re never starting over.

Done all by text.

You stay in control the whole time. You confirm before Ari acts. It takes on the rest.

This is what it looks like when the medical system finally has your back.

Welcome to Ari. 💛

BIG NEWS for Heterotaxy families.We’ve been invited to get early access to help test the upgraded AI Advocate from Citiz...
09/01/2026

BIG NEWS for Heterotaxy families.
We’ve been invited to get early access to help test the upgraded AI Advocate from Citizen Health. Meet Ari.
Ari is an AI health companion that doesn’t just answer your questions, but can take on the work for you; symptom tracking, appeals, spotting trends and more – your proactive, human-like advocate is ready to bring you relief. 

Everyone in our community is being offered FREE premium access through the end of the year. If you want to be one of the founding families using and testing Ari with us, it only takes a minute to get started. If you already have a Citizen Health account, you will still need to sign up separately but you will be able to link your previous account.

Sign up here: https://www.citizen.health/join/heterotaxy-connection

A few things Ari can do to help take things off your plate: 

📊 Symptom tracking
🛡️Appeal a denial 
📅 Spot what’s coming
🔬 Read new labs

Ari is in early testing and access is invite-only at NO COST. Citizen Health is building it with families like yours, and your feedback shapes what comes next, which is exactly why we wanted our community in early.

08/04/2026

At this year’s Family Conference in Colorado, we partnered with the Angelman Syndrome Foundation to introduce Ari to attending families.

This message came from a caregiver afterward.

The goal was never to just build another app. It was to help lighten the mental load caregivers carry everyday.

Thank you to the Angleman Syndrome Foundation for partnering with us, and to every family helping the future of Ari through your feedback and lived experience.

07/01/2026

📲 www.citizen.health/share

💜🔬If your family is affected by Childhood Absence Epilepsy (CAE) or Juvenile Absence Epilepsy (JAE), you can help move research forward into what causes these conditions, how they affect people, and how they're treated.🔬💜

Hear more from Ashley on our clinical operations team in the video on why this matters so much.

How it works: Citizen Health gathers your medical records from all your providers, so your data can support research with no ongoing effort from you.

Signing up is free and takes about 5 minutes. In return, you get:
• Access to our AI Advocate to help you search and understand your records
• Money shared back to you if your data is used for research

Your data is only ever shared on a deidentified basis, with your consent, and is protected by Citizen Health's privacy-first principles and SOC 2 certification.

It's why 100+ patient advocacy groups trust Citizen Health.

👉 Sign up at: www.citizen.health/share

When Nasha Fitter co-founded Citizen Health, there were no therapies and no roadmap for families like hers. Today, we su...
06/18/2026

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


"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 — y...
05/28/2026

"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

05/26/2026

Content note: this third and final clip from our Citizen Health Voices discussion includes discussion of a very difficult period in Sumaira's journey.
--
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

05/20/2026

🩷💛 "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

05/07/2026

🌟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


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