Rare disease
is not a rare problem.
10,000 diseases. 350 million patients.

Join the movement of patients and families using their health data to improve care and drive groundbreaking treatments.
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Improving our health takes a village.
Learn from the shared experiences of others to improve your health journey.
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Gain access
Centralize your medical records from every clinician and hospital in one place. Share your information for second opinions or when you urgently need it from the emergency room.
Get answers
Learn from those who have walked this path. Discover how your symptoms, current medications and therapies compare to other patients in your community.
Drive cures
Share your health data securely with researchers working on treatments for your disease. Be the first to know about cutting edge research, treatments and clinical trials.
How it works
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Easily access your medical records
Gain insight into your disease
Choose to share your data to accelerate new treatments
you can feel.
It took less than two minutes
My son's case manager nurse asked for a list of all of his diagnoses. I just had to pull his Citizen's neuro summary and share with her. It took me less than two minutes.
SYNGAP1 syndrome mom
Organized and searchable
A couple weeks ago my 13-year-old son was invited to be seen at a specialty clinic at Children’s Hospital Colorado for the first time. They asked me to have his pediatrician fax over a referral and multiple documents. I said to the nurse, I can do better than a fax. I have my child’s entire medical history available in Citizen. I shared his Citizen link with her and she then had access to everything organized and searchable through that link.
Rare disease mom
Central storage for reports and images
Just today I used images from Citizen to discuss my issues with a new provider. As you know, having many institutions trying to access my reports and images can be difficult… Having a central storage for these reports and images is critical when trying to keep at least 7 doctors up-to-date.
Cholangiocarcinoma patient
I can stop repeating myself
We are constantly in and out of emergency rooms with our daughter due to seizures. It is emotionally draining to have to explain her past over and over. Now, I can log-in to her Citizen account, share her history with the doctors and nurses, and stop repeating myself.
SLC13A5 deficiency mom
Such a relief
It is such a relief to know my extensive records are being collected in a central place and that they can be accessed when needed. I was diagnosed with bladder cancer this year and my records continue to grow. If I can help with any research that will find cures for these cancers, I want to participate. Knowing that my records can be accessed through Citizen makes it possible to help in such research studies.
Bladder cancer patient
I don't have to leave my home
A few years ago, I was asked to participate in a natural history study for our disorder. I had to take time off work, drive two hours, and leave my other kids at home. Honestly, it was too much. I like that with Citizen I can still contribute to research but don’t have to leave my home.
FOXG1 syndrome dad
Connecting patients,
accelerating cures.
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