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

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Vision

It is no longer good business to leave rare diseases behind

The math changed. The institutions that retool first capture leadership.

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This week

Regulatory

Our FDA Comment: AI-Enabled Optimization of Early-Phase Clinical Trials Pilot Program

Cureledger's May 27, 2026 comment to Docket FDA-2026-N-4390: rare disease as the pilot's most generalizable use case, within-person variability as the decision-quality threshold, privacy for cohorts under 100, and data custody that outlives the sponsor.

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Data Sovereignty

Preventing AI medicine's biggest trap for rare disease

Why AI drug discovery becomes extraction without ownership infrastructure.

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The rare disease singularity
Vision

The rare disease singularity

Four capabilities converged. Cures are reachable.

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Read all41 of 109 · Tag: Newborn screening
  1. May 7, 2026Glutaric acidemia I and the striatum
  2. May 7, 2026The C5-OH cluster
  3. May 7, 2026Isovaleric acidemia, the genotype-phenotype question
  4. May 7, 2026The fatty acid oxidation family
  5. May 7, 2026Carnitine uptake defect
  6. May 7, 2026LCHAD deficiency
  7. May 7, 2026Trifunctional protein deficiency
  8. May 7, 2026VLCADD, the three phenotypes
  9. May 7, 2026Hearing loss, the other newborn screen
  10. May 7, 2026Propionic acidemia, the cardiomyopathy the screen cannot prevent
  11. May 7, 2026Methylmalonic acidemia, mutase deficiency
  12. May 7, 2026Methylmalonic acidemia, cobalamin disorders
  13. May 7, 2026Argininosuccinic aciduria
  14. May 7, 2026Citrullinemia type I
  15. May 7, 2026Hurler syndrome, the bone marrow transplant pioneer
  16. May 7, 2026Hunter syndrome, the blood-brain barrier problem
  17. May 7, 2026GAMT, the third OTC supplement treatment
  18. May 7, 2026Hemoglobin SC, the quieter sickle variant
  19. May 7, 2026Sickle beta-thalassemia, the third form
  20. May 7, 2026CCHD, the screen without a blood spot
  21. May 7, 2026Duchenne, the other disorder waiting for the panel
  22. May 7, 2026CAH, the endocrine emergency the screen prevents
  23. May 7, 2026Tyrosinemia type I, the drug that rewrote the prognosis
  24. May 7, 2026Homocystinuria, the vitamin-responsive amino acid disorder
  25. May 7, 2026Krabbe disease and the screen that runs out of time
  26. May 7, 2026X-ALD, from Lorenzo's oil to gene therapy
  27. May 7, 2026Biotinidase deficiency, the vitamin that prevents deafness
  28. May 7, 2026Cystic fibrosis, the poster child grows up
  29. May 7, 2026Metachromatic leukodystrophy, the four million dollar treatment that needs screening
  30. May 7, 2026PKU in the developing world
  31. May 7, 2026The Screening Success Nobody Talks About
  32. May 7, 2026When Perfect Compliance Is Not Enough
  33. May 7, 2026The Babies Whose Deaths Were Blamed on Their Parents
  34. May 7, 2026The Mennonite Clinic
  35. May 7, 2026The Mothers Who Built Newborn Screening
  36. May 7, 2026Bubble Boy to Population Screening in One Generation
  37. May 7, 2026Race, Screening, and the $2 Million Cure
  38. May 7, 2026The Father Who Became a Biotech CEO
  39. May 7, 2026The Most Expensive Drug and the Argument for Speed
  40. Apr 28, 2026PKU formula, a logistics primer
  41. Apr 28, 2026What is newborn screening, in plain words