Connecting rare disease families with each other to get better answers

Caregivers want to make the best decisions for their child, but clear answers are hard to find. Citizen Health connects a patient’s history with what rare disease families have learned, surfacing relevant guidance faster.

client

Citizen Health

role

0 to 1 Design (Full design)

status

In Progress

challenge

In forums, useful advice is buried in long, unverified threads.

our solution

Citizen Health gives you insights into real people

ChatGPT

Can suggest options, but doesn’t know what worked for children who already tried MiraLAX.

Citizen Health

Surfaces real outcomes from children with persistent constipation who also tried MiraLAX.

To deliver personalized answers, we combine two forms of context

1

Medical records in one place

Records capture diagnoses, treatments, and care over time.

2

Daily experiences between appointments

Journal entries capture symptoms, medication changes, and patterns over time.

Together, this context helps us find more relevant patient matches

What families log

What the hospital holds

12 matched patients

Designing a system for community insights

design system

Designing community insights families can trust

Make every insight clear, relevant, and traceable.

Impact

Turning lived experience into better answers

This project reinforced how much impact can come from making complex information feel simple and personal. The opportunity wasn’t to add more information, but to help caregivers find the right guidance at the right moment without digging through fragmented forums and conversations.