Citizen Health

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

10/29/2026

Nobody hands you a manual for a rare diagnosis. So we built one that learns with you.

Meet Ari, your AI teammate that keeps track of every detail of care so you don’t have to figure it out alone. 💜

What did you have to learn the hard way? 👇

You know things about your loved one that no chart can show. The way a seizure starts. The small change that means somet...
10/27/2026

You know things about your loved one that no chart can show. The way a seizure starts. The small change that means something’s off. The questions you’ve asked a hundred times, still waiting for answers.

This morning, Nasha Fitter carried that knowledge into a room full of scientists at the Broad Institute and made sure they heard it. Your days, your worries, and your hard-won expertise are what research needs most.

Thank you for trusting us with your story. You’re not on the sidelines of finding cures. You’re helping lead the way. 💜

10/26/2026

1,306,555 messages in six months.

That’s how often families have turned to Ari. They ask about a new symptom at 2am, get ready for a specialist appointment, or try to make sense of a test result before the next call with their care team.

Rare disease caregiving doesn’t run on business hours, so Ari doesn’t either.

Every message is a family that didn’t have to figure it out alone. Thank you to everyone who’s trusted us to be part of their journey. 💜

10/23/2026

What nobody tells you about IEPs 👇

We hosted a free session with IEP specialist Staci Zimmerman, M.Ed., and here are three of her tips:
✔️ You can ask for the IEP draft 48 to 72 hours before the meeting.
✔️ The whole IEP team should be there, including general ed teachers. If someone leaves early, you can ask to pause.
✔️ You don’t have to finish in one day. The meeting can continue until you’re comfortable.

The full session is free to watch. Link in bio.

And if your child’s IEP runs 20+ pages, send it to Ari, your personal advocate from Citizen Health. Ari reads it back in plain language and helps you get ready for the next meeting.

The scariest things in rare disease aren’t monsters. These scares are real, and they show up all year. 🎃 what’s your sca...
10/22/2026

The scariest things in rare disease aren’t monsters. These scares are real, and they show up all year.

🎃 what’s your scariest?

10/21/2026

When her son was diagnosed with Lennox-Gastaut syndrome, Kathy suddenly had a hundred new things to keep track of. How many seizures? What type? How long did it last? Is the new medication working? Is his VNS actually making a difference?

Now she just texts Ari.

A seizure happens → she texts the type and how long it lasted.

The school sends his daily seizure log → she texts a photo of it.

Ari logs it all in one place, checks in on how he’s doing, and helps her make sense of it.

Before a recent neurology visit, Ari helped surface something the family had never been able to see: a pattern tied to the timing of one of his medication doses. Kathy brought it to his neurologist, who agreed with the recommendation, and his VNS data backed it up.

“Ari has taken something that has always felt overwhelming and made it manageable.”

Thank you, Kathy, for sharing your family’s story 💜 And thank you to LGS Foundation for being part of it.

Caring for someone with a rare or complex condition? Meet Ari, link in bio.

A rare diagnosis can feel like the ground just shifted. You’re not alone, and you don’t have to figure it all out today....
10/19/2026

A rare diagnosis can feel like the ground just shifted. You’re not alone, and you don’t have to figure it all out today. 💜

Here’s where to start:
1️⃣ Breathe. A name for what you’ve been seeing doesn’t change who your child is.
2️⃣ Find your people. Advocacy groups connect you with families who’ve been there.
3️⃣ Find the right specialist. Ask your community who they trust.
4️⃣ Keep it all in one place. Ari can gather and organize records, test results and visit notes for you.
5️⃣ Look into support early. Regional centers and foundations can open doors to services and grants.

Save this for later, or share it with a family who needs it today.

10/14/2026

💜 One conversation changed my daughter’s care.

The first time I went to Epilepsy Awareness Day at Disneyland I didn’t know what to expect.
I met an epileptologist I’d never have had the chance to meet. Because of that conversation, we changed Amara’s medication.
Here’s what nobody warns you about as a rare epilepsy parent:
• The few people who really know your child’s condition are scattered across the world
• You’re the only one holding the whole history, and you’re holding it from memory
• Most of your questions never survive a fifteen minute appointment

Two days in November fixes the first one.
The second one you can start on this week.

Ari keeps the whole history in one place, so in November you walk in with it instead of trying to recall it on the spot.

Free to start: www.citizen.health/eaddl
Register for Epilepsy Awareness Day here: www.epilepsyawarenessday.org
Nasha, co-founder at Citizen Health, and Amara’s mom

10/12/2026

Every record matters, because every family’s story matters. 💜

Our Head of Clinical Strategy, Elli Brimble, takes you behind the scenes of how Citizen Health turns medical records into progress for rare disease families.

It starts with our team working hard to gather a complete set of records. When something is missing or was never collected, we do the research to track it down, so no part of your loved one’s story gets left out.

From there, another Citizen Health team goes through every single line of that data and carefully organizes it into categories. That work helps us understand how rare diseases really show up and change over time, and it builds the evidence needed to support clinical trials and new therapies.

To the families who trust us with their records: your experiences are shaping what comes next. We don’t take that lightly. 🧬

For families living with rare disease, the hardest part often isn’t just the diagnosis. It’s everything that comes after...
10/09/2026

For families living with rare disease, the hardest part often isn’t just the diagnosis.

It’s everything that comes after.

Parents of kids with rare or complex conditions spend 50 to 90 hours a week on care.

That’s more than a full-time job, and much of it is paperwork: chasing records, fighting insurance denials, prepping for appointments, tracking symptoms.

Most of this work falls on mothers, and many leave their careers to do it.

At the same time, small patient populations and scattered data mean most treatment research skips these families entirely.

At Citizen Health, we’re working on both problems together.

Ari takes on the administrative load so parents get their time back, and the care they already give becomes patient-consented, real-world evidence that helps researchers study diseases once considered too small to study.

Strong advocacy shouldn’t depend on who you know. We’re building it for every family. 💜

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