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The case for patient-controlled rare disease data across science, policy, and the lived experience.

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Unpaid data farmers

The data work we have been doing for free, finally compensated.

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The flywheel

Cohort proof licensed. Contribution measured. Deposit lands.

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Cohort proofs

Privacy from cryptography. Validation without exposure.

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What a trust is, and why this one

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Data Sovereignty Vision Science & Data Patient Experience Regulatory Ultra-rare Accelerating innovation Ehlers-Danlos Newborn screening Company History

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Jul 13, 2026Unpaid data farmersData Sovereignty
Jul 6, 2026The flywheelVision
Jun 29, 2026Cohort proofsScience & Data
Jun 22, 2026What a trust is, and why this oneData Sovereignty
Jun 15, 2026Reviews are the doorPatient Experience
Jun 8, 2026Cureledger is your ledgerData Sovereignty
Jun 1, 2026It is no longer good business to leave rare diseases behindVision
May 27, 2026Our FDA Comment: AI-Enabled Optimization of Early-Phase Clinical Trials Pilot ProgramRegulatory
May 25, 2026Preventing AI medicine's biggest trap for rare diseaseData Sovereignty
May 14, 2026The rare disease singularityVision
May 7, 2026Ethan Perlstein and the other n-of-1Ultra-rare
May 7, 2026Adrian Krainer and the splicing mechanism that became SpinrazaUltra-rare
May 7, 2026Wendy Chung and the natural-history-first modelUltra-rare
May 7, 2026Steven Gray and the AAV9 platform for rare brain diseaseUltra-rare
May 7, 2026Stanley Crooke and the n-of-many foundationUltra-rare
May 7, 2026Timothy Yu and the lab that built the first individualized drugUltra-rare
May 7, 2026AAV gene therapy at single-patient scaleUltra-rare
May 7, 2026How splice-switching ASOs workUltra-rare
May 7, 2026What an n-of-1 trial actually isUltra-rare
May 7, 2026The speed thesisAccelerating innovation
May 7, 2026The community review as clinical trialAccelerating innovation
May 7, 2026The cure horizonAccelerating innovation
May 7, 2026The acceleration equationAccelerating innovation
May 7, 2026The rare disease data marketAccelerating innovation
May 7, 2026The provider discovery problemAccelerating innovation
May 7, 2026The global natural history studyAccelerating innovation
May 7, 2026High consanguinity as research acceleratorAccelerating innovation
May 7, 2026The regulatory arbitrage opportunityAccelerating innovation
May 7, 2026Rare disease as the proving groundAccelerating innovation
May 7, 2026The EDS diagnosis problem solves itselfEhlers-Danlos
May 7, 2026The real-time trial as defaultAccelerating innovation
May 7, 2026The product review as outcomes dataAccelerating innovation
May 7, 2026The insurance argument that winsAccelerating innovation
May 7, 2026The end of the diagnostic odysseyAccelerating innovation
May 7, 2026The phenotype cloudAccelerating innovation
May 7, 2026The incidental diagnosis cascadeAccelerating innovation
May 7, 2026Control data for the next cureAccelerating innovation
May 7, 2026Cross-condition signal detectionAccelerating innovation
May 7, 2026From Orphan Drug to Platform DrugAccelerating innovation
May 7, 2026How Data Cures Rare DiseaseAccelerating innovation
May 7, 2026The Drug Made for OneAccelerating innovation
May 7, 2026What the Nurses' Health Study Built, and What Rare Disease LacksAccelerating innovation
May 7, 2026Sponsors Leave. Patients Don't.Accelerating innovation
May 7, 2026The Economics of OneAccelerating innovation
May 7, 2026The N-of-1 Trial as InfrastructureAccelerating innovation
May 7, 2026The Parent ScientistAccelerating innovation
May 7, 2026The Time Value of DataAccelerating innovation
May 7, 2026When Diagnostic Categories DissolveAccelerating innovation
May 7, 2026Why We Say CureAccelerating innovation
May 7, 2026Glutaric acidemia I and the striatumNewborn screening
May 7, 2026The C5-OH clusterNewborn screening
May 7, 2026Isovaleric acidemia, the genotype-phenotype questionNewborn screening
May 7, 2026The fatty acid oxidation familyNewborn screening
May 7, 2026Carnitine uptake defectNewborn screening
May 7, 2026LCHAD deficiencyNewborn screening
May 7, 2026Trifunctional protein deficiencyNewborn screening
May 7, 2026VLCADD, the three phenotypesNewborn screening
May 7, 2026Hearing loss, the other newborn screenNewborn screening
May 7, 2026Propionic acidemia, the cardiomyopathy the screen cannot preventNewborn screening
May 7, 2026Methylmalonic acidemia, mutase deficiencyNewborn screening
May 7, 2026Methylmalonic acidemia, cobalamin disordersNewborn screening
May 7, 2026Argininosuccinic aciduriaNewborn screening
May 7, 2026Citrullinemia type INewborn screening
May 7, 2026Hurler syndrome, the bone marrow transplant pioneerNewborn screening
May 7, 2026Hunter syndrome, the blood-brain barrier problemNewborn screening
May 7, 2026GAMT, the third OTC supplement treatmentNewborn screening
May 7, 2026Hemoglobin SC, the quieter sickle variantNewborn screening
May 7, 2026Sickle beta-thalassemia, the third formNewborn screening
May 7, 2026CCHD, the screen without a blood spotNewborn screening
May 7, 2026Duchenne, the other disorder waiting for the panelNewborn screening
May 7, 2026CAH, the endocrine emergency the screen preventsNewborn screening
May 7, 2026Tyrosinemia type I, the drug that rewrote the prognosisNewborn screening
May 7, 2026Homocystinuria, the vitamin-responsive amino acid disorderNewborn screening
May 7, 2026Krabbe disease and the screen that runs out of timeNewborn screening
May 7, 2026X-ALD, from Lorenzo's oil to gene therapyNewborn screening
May 7, 2026The 14 EDS subtypes, in plain wordsEhlers-Danlos
May 7, 2026Vascular EDS, the dangerous subtypeEhlers-Danlos
May 7, 2026Classical EDS, the originalEhlers-Danlos
May 7, 2026Kyphoscoliotic EDSEhlers-Danlos
May 7, 2026Cardiac-valvular EDSEhlers-Danlos
May 7, 2026Dermatosparaxis EDSEhlers-Danlos
May 7, 2026Biotinidase deficiency, the vitamin that prevents deafnessNewborn screening
May 7, 2026Cystic fibrosis, the poster child grows upNewborn screening
May 7, 2026Metachromatic leukodystrophy, the four million dollar treatment that needs screeningNewborn screening
May 7, 2026The Beighton Score ProblemEhlers-Danlos
May 7, 2026EDS and pregnancyEhlers-Danlos
May 7, 2026Lidocaine resistance and EDSEhlers-Danlos
May 7, 2026PKU in the developing worldNewborn screening
May 7, 2026The Diagnostic Odyssey as Systems FailureEhlers-Danlos
May 7, 2026Three Specialists Who Don't Talk to Each OtherEhlers-Danlos
May 7, 2026The Screening Success Nobody Talks AboutNewborn screening
May 7, 2026When Perfect Compliance Is Not EnoughNewborn screening
May 7, 2026The Babies Whose Deaths Were Blamed on Their ParentsNewborn screening
May 7, 2026The Mennonite ClinicNewborn screening
May 7, 2026The Mothers Who Built Newborn ScreeningNewborn screening
May 7, 2026Bubble Boy to Population Screening in One GenerationNewborn screening
May 7, 2026Race, Screening, and the $2 Million CureNewborn screening
May 7, 2026The Father Who Became a Biotech CEONewborn screening
May 7, 2026The Most Expensive Drug and the Argument for SpeedNewborn screening
Apr 28, 2026Serola SI belt, a daily-life spotlightEhlers-Danlos
Apr 28, 2026PKU formula, a logistics primerNewborn screening
Apr 28, 2026What is newborn screening, in plain wordsNewborn screening
Apr 28, 2026hEDS criteria 2017, for the newly diagnosedEhlers-Danlos
Apr 28, 2026The network, and why it existsUltra-rare
Apr 22, 2026Our FDA Comment: Plausible Mechanism Framework Draft GuidanceRegulatory
Apr 22, 2026Our FounderCompany
Apr 22, 2026The Data That Saves: How Robert Guthrie Built the Infrastructure for a CureHistory
Apr 22, 2026What "Best Case" Looks Like in Rare DiseasePatient Experience
Apr 22, 2026From N-of-1 to Engine of CuresScience & Data
Apr 22, 2026Small Datasets Are Not Small When They Are DenseScience & Data
Apr 22, 2026You Are Not a SubjectData Sovereignty
Apr 22, 2026The FDA Is Ready. The Infrastructure Is Not.Regulatory
Apr 22, 2026Cures, Not ManagementVision
Apr 22, 2026We Are Not 23andMeData Sovereignty
Apr 22, 2026The Regulatory Landscape Is Finally ReadyRegulatory