Carrie Ostrea | Thoughts from a Rare Life

Carrie Ostrea | Thoughts from a Rare Life

Home
Notes
Getting a Diagnosis
Daily Life and Caregiving
Becoming an Advocate
Families Who Get Overlooked
Telling Your Story
Archive
About

Becoming an Advocate

The Geneticist’s Office: What No One Tells You After a Rare Disease Diagnosis
What I would tell a newly diagnosed family, seventeen years after we sat in that office.
Sep 30 • Carrie Ostrea
© 2026 Carrie Ostrea · Privacy ∙ Terms ∙ Collection notice
Start your SubstackGet the app
Substack is the home for great culture