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• Rare Disease Girl

  I want to help you save your own life. RDG is a digital atlas for navigating our inevitable challenges: personal memoir, health systems, mental wellness, patient-empowerment, life-saving tips, and motherhood.

  10 posts · theirs

Lately

• 5 Things Worth The Money - The Patient Edition

  Rare Disease Girl · 2026-08-16

• 3x3 Thursday - On Uncertainty Versus Possibility

  Rare Disease Girl · 2026-08-13

• Resilience Fatigue Is Real.

  Rare Disease Girl · 2026-08-09

• 3x3 Thursday - On Turning Points

  Rare Disease Girl · 2026-08-06

• Crickets on the aHUS Name Change Front... until now

  Rare Disease Girl · 2026-07-24

• The Angel POV

  Rare Disease Girl · 2026-07-16

• Going to The Pitt

  Rare Disease Girl · 2026-07-05

• Kid Adventures + Meeting The Cast of the Pitt & Jane Fonda

  Rare Disease Girl · 2026-06-16

• Dear Insurance Industry, Don’t Pee On My Leg And Tell Me It’s Raining.

  Rare Disease Girl · 2026-06-07

• The Patient Mental Health Guide

  Rare Disease Girl · 2026-05-21

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