I’m Carrie Ostrea. I’m a rare disease parent and advocate, and for thirteen years Robert and I ran the Little Miss Hannah Foundation in Southern Nevada. Our daughter Hannah was diagnosed with Gaucher disease type 2 in 2009 and passed away in 2011, at three years old. I have been writing about rare disease since then, and writing my way through hard things for longer than that.
This is where my writing lives for families and people living with rare disease, and for the people who care for them. I write about the decisions, the gaps, and the moments that are hard to see unless you have lived alongside a rare disease. My hope is that something here helps you see a situation you already know a little differently.
Everything here is free and will stay free. The families I write for should not have to pay to read it. You can read without subscribing, or subscribe and get new pieces by email.
Most of these articles first appeared on LinkedIn, where they reach the professionals who work in rare disease, and they come here a few days later. Over the first two months I’m adding earlier pieces alongside new ones. After that, expect something new about every two weeks.
You can also find me at carrieostrea.com and on LinkedIn.
I work in biopharma patient advocacy. These views are my own, written as a rare disease parent and advocate, and do not represent any employer or organization I work with. Nothing here is medical advice.
