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

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Patient Experience

What the system tells us

Nine sentences inherited from a different era.

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This week

Patient Experience

What we still have to do

The structural friction of rare disease daily life.

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Data Sovereignty

Unpaid data farmers

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

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Vision

The flywheel

Cohort proof licensed. Contribution measured. Deposit lands.

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Read all3 of 117 · Tag: Science & Data
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  1. Jun 29, 2026Cohort proofsScience & Data
  2. Apr 22, 2026From N-of-1 to Engine of CuresScience & Data
  3. Apr 22, 2026Small Datasets Are Not Small When They Are DenseScience & Data
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