Blog
The case for patient-controlled rare disease data across science, policy, and the lived experience.
Our Founder
Nina Kilbride on building Cureledger since 2015: financial-grade rare disease data marketplaces, AI that can finally use longitudinal patient data, and privacy as core design.
Read →HistoryThe Data That Saves: How Robert Guthrie Built the Infrastructure for a Cure
In 1960, a microbiologist solved two problems at once: detecting PKU and collecting the specimen from every newborn, everywhere, without requiring infrastructure most families would never access. We named our platform after him.
Read →Patient ExperienceWhat "Best Case" Looks Like in Rare Disease
PKU has newborn screening, a known treatment, and decades of research. The care is still rudimentary. This is what the lucky ones get.
Read →Science & DataFrom N-of-1 to Engine of Cures
PKU made newborn screening because of a technical accident. For the other 7,000 diseases, we need infrastructure, not luck.
Read →Science & DataSmall Datasets Are Not Small When They Are Dense
A single patient logging daily produces more data than most clinical trials. The problem is not rarity; it is instrumentation.
Read →Data SovereigntyYou Are Not a Subject
Today your daily lived experience goes unrecorded. Cureledger makes you contributor, owner, and beneficiary simultaneously.
Read →RegulatoryThe FDA Is Ready. The Infrastructure Is Not.
The regulatory architecture for N-of-1 therapeutics exists. What's missing is the patient-side data to feed it.
Read →VisionCures, Not Management
Drug development rewards chronic conditions. Rare disease got left behind. But when the data is structured, a cure is an engineering problem.
Read →Data SovereigntyWe Are Not 23andMe
When 23andMe went bankrupt, patient data went with it. Cureledger is built so that can never happen.
Read →RegulatoryThe Regulatory Landscape Is Finally Ready
Frameworks for small-population trials, patient-generated evidence, and AI-driven pattern recognition now exist. The infrastructure to feed them does not.
Read →Data SovereigntyHenrietta Lacks at Scale
AI drug discovery is about to make patient data the most valuable raw material in medicine. Without ownership infrastructure, that is extraction, not innovation.
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