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Science Didn't Understand My Kids' Rare Disease Until I Decided to Study It
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- 1 Intro
- 2 The worst Christmas
- 3 Backstory
- 4 Elizabeths rash
- 5 Elizabeths eyes
- 6 What do you know
- 7 Sharing
- 8 No systematic effort
- 9 Two major barriers
- 10 PXE International
- 11 Hardcore research
- 12 Fear
- 13 Genetic Alliance
- 14 Citizen scientists
- 15 Stakeholders
- 16 How do we make it
- 17 Take risks
- 18 My fear
- 19 Where does it come from
- 20 I love people
- 21 The enormity of our loving
- 22 The boundless capacity for love
- 23 I dont fear fear
- 24 My kids
