Thoughts From a Rare Life | Carrie Ostrea

Rare Disease Parent Advocate

My daughter Hannah was born in 2008 and diagnosed with Gaucher disease at five months old. She died in December 2011, at three. In the years since, I founded and ran the Little Miss Hannah Foundation, worked alongside patient organizations and families across the rare disease community, and moved into industry to keep doing that work from the inside.

I write about rare disease as families, advocates, and communities actually live it: the words we use comfortably and what they mean for the people living them, the communities that get overlooked, and what seventeen years as a parent advocate have taught me. New pieces go out through my newsletter, Thoughts from a Rare Life.

You can also find me on LinkedIn or email me at carrie.ostrea@gmail.com.

Recent writing

Who Gets to Decide What a Family Wants to KnowNewborn screening when there is no treatment, and the difference between deciding for families and deciding with them.
We Closed Our Little Miss Hannah Foundation on Our Best YearWhy my husband and I ended the foundation after thirteen years, and what it means to close something well.
Your Rare Disease Experience Is Bigger Than One CommunityWhat it takes to carry what you learned in one disease community into work across many.
She Built It From NothingWhat happens when research finally reaches an ultra-rare community, and what it asks of the one mother holding it together.
The Geneticist’s OfficeWhat no one tells you after a rare disease diagnosis, and what I wish someone had said to us in that room.