A journal for each condition
2,000+ rare-disease journals, coded to the same standards as the record and explained in pictures.
A rare disease is rare — until it's yours.
A family facing a rare disease often meets specialists who have never seen it. StoryMD gives them a guide that has: coded, visual journals for each condition, mapped to their own record, and a 24/7 companion.
25–30M
Americans live with one of more than 10,000 rare diseases
NIH
2,000+
coded, visual rare-disease HealthJournals
24/7
a companion that knows the whole record
Years of searching, one record.
Each disease is rare on its own, but the families living with one face the same challenges: finding information, getting a diagnosis, and finding resources. A diagnosis often takes years, one specialist after another, each with a piece of the record and few who have seen the condition before.
StoryMD brings the pieces together. Its rare-disease journals turn scattered, hyper-specialized clinical data into clear scientific visualizations, mapped to the patient's own record, so the family, and every new clinician, starts from the whole story.
Built for the conditions no one else covers.
One knowledge base, one record and one companion, for the conditions mainstream health tech leaves out.
Built for complexity
When a condition crosses systems and specialists, one longitudinal picture keeps anything from falling through the gaps.
A 24/7 health concierge
The companion explains results, answers questions and preps the family for every appointment.
Through every stage
From a child's first symptoms to the move into adult care, the record and the companion travel with the patient.
Understand the diagnosis.
From the StoryMD library: what makes a disease rare, the genetics behind many of them, how they are found and treated, and the rare cancers, children's included.
JournalRare diseases
What makes a disease rare, and the challenges families living with one share.
StoryRare diseases are far more common than you think
As many as 30 million Americans may be living with a rare disease, and why they need more attention.
JournalGenetic disorders
How a change in a person's genes can cause a medical condition, the main types, and how they are diagnosed.
JournalNewborn screening
The metabolic and genetic disorders screening finds shortly after birth, while they are still treatable.
JournalPrimary immune deficiency diseases
When the immune system doesn't work as it should, and why infections hit harder.
JournalRare cancers
Cancers that each affect fewer than 40,000 people a year in the U.S., and together over a quarter of all cancers.
JourneyChildhood and teen cancer
The cancers children and teens face, from diagnosis through treatment, explained visually.
JournalGene therapy
How changing a person's genes can treat or cure disease, from genetic conditions to cancer.
Your rare disease is not your whole story.
Tracking the whole person, not just the diagnosis, changes rare-disease care: sleep, mood, activity and daily life, beside the labs and the scans, on one record.