Carrie Ostrea, Rare Disease Advocacy

10/15/2026

Years ago I made a cover photo for a private Facebook group of Gaucher type 2 families. I asked the parents for a photo of their child and spent an evening lining the faces up in Photoshop.

Somewhere in that evening I noticed the kids shared something none of us had ever put into words. I sent it to the lead researcher at the NIH, and she went back through her own photos.

If you run a private group for families with a rare disease, this one's for you.

https://writing.carrieostrea.com/p/the-clinical-finding-that-came-from

10/14/2026

Every parent I've met remembers the exact words their child's diagnosis came with. Ours were "take her home and love her." Then everyone left the room, and we were on our own to figure out what came next.

It took me months to find another parent who had been down that road. Seventeen years later, many families still walk out of that room the way we did, especially in the rarest diseases, where there's no group waiting for them yet.

If you support newly diagnosed families, or you are one of them, I wrote down what I wish someone had said to us that day. Some of it is practical, and some of it I only learned the slow way.

https://writing.carrieostrea.com/p/the-geneticists-office-what-no-one

10/06/2026

If you've ever stood up and told your child's story to a room full of strangers, you know it costs something. The people asking almost never see that part.

I've shared Hannah's story for seventeen years, on stages, with reporters, and in rooms full of researchers. I can get through it when I know it's coming. What still gets me is the moment I don't see coming.

Another parent advocate put words to this for me, and I haven't stopped thinking about it. This one is for anyone who shares their story, and anyone who asks families to.

https://writing.carrieostrea.com/p/sharing-our-stories-is-a-gift-and

09/22/2026

Over the past several months, I've been writing here more regularly about rare disease, drawing on seventeen years on both sides of the table. I've loved being able to return to writing, which has always been therapy for me, and to share my thoughts and experiences as part of the rare disease community.

http://www.carrieostrea.com

So I'm bringing my writing together here in a newsletter. Each new article I share will be published as an edition, giving subscribers a way to know when I publish something, regardless of when we're both online. I'll also republish the pieces from earlier this year, one at a time and clearly marked as earlier work, so that everything eventually lives in one place.

The subjects will vary, but they'll stay rooted in the same place: rare disease as people, families, advocates, and communities actually experience it, and the questions and obstacles that get more complicated the longer you spend in this field.

Sometimes that perspective comes from being Hannah's mom, and Ethan and Abigail's. Sometimes it comes from the years I spent building and eventually closing our nonprofit, the Little Miss Hannah Foundation. Sometimes it comes from what I've learned alongside friends, colleagues, and strangers across the rare disease community.

If you've already read some of my articles, thank you. If you're finding my writing for the first time, welcome. If you're interested in subscribing, I'd love that, so we can keep the conversation going.

And if you have a question or want my perspective on something, send me a direct message here. I'm always up for a conversation that makes me think.

https://www.linkedin.com/newsletters/thoughts-from-a-rare-life-7505792930704572416/

09/17/2026

Every time I tell someone my husband and I closed our Little Miss Hannah Foundation, they say "I'm sorry" before I can finish the sentence.

It was our choice, and it was the right one. There were hard choices and real consequences behind that decision, and I think it matters to say why, because the toll of founding and running a rare disease patient group is not something we talk about honestly.

If you founded a patient group, or you work alongside people who did, I want you to hear one thing. The work you committed to is yours to define. How long you carry it, what shape it takes, and when your part of it is done are your decisions to make on your own terms. They are not obligations you inherited from grief or from what other people expect of you.

A lot of rare disease patient group founders I know are exhausted and keep going because they think stopping would mean they failed the person they started it for, or the community they built. Nobody ever told them there was another option.

There is. You are allowed to complete your part of the mission. Click to read more…
https://www.linkedin.com/pulse/we-closed-our-little-miss-hannah-foundation-best-year-ostrea-mba-xillc/

09/08/2026

My husband Robert Ostrea wrote this, and I wanted to share it even though it's a couple of months past International Paramedics Day. Every word about the paramedics who came to our home during Hannah's life is true.

I want to add one thing. For most people, a paramedic in the driveway is the worst day of their life. For many rare disease families, it becomes part of the routine. The airway emergencies, the 911 calls, the ambulance your other kids learn to recognize. It is one of the hardest parts of this life, and almost no one outside the house ever sees it.

Paramedics saw that side of our life up close, the side most people never do. So today I am thankful for them, and I hope it reminds people that rare disease families are usually carrying more than they let on.

https://www.linkedin.com/feed/update/urn:li:activity:7480606680938991616/

08/19/2026

I get asked a version of the same question all the time from parent and patient advocates who want to branch out past their own community. "I have given years to my disease, how do I do more with what I have learned?"

Here's my honest thoughts: It starts with the thing I watch advocates undervalue in themselves most: the lived experience you carry is the most valuable thing you have, and the way to honor it is to take it beyond your own disease.

I often think about the people who took a chance on me along the way. Years ago, my previous direct manager hired me into my first industry role when I had deep advocacy experience across many rare diseases and no traditional professional background. She trusted that range more than a conventional resume, and I have carried that forward ever since.

If you are an experienced advocate wondering how to widen your reach, this one is for you.

https://www.linkedin.com/pulse/your-rare-disease-experience-bigger-than-one-carrie-ostrea-mba-vwzdc/?trackingId=6cSUw4O9OtAe%2FJ0LQyEu%2FQ%3D%3D

08/04/2026

We say "underserved" constantly in rare disease, and I am not sure we always agree on what it means. After years of running our foundation, I came to see underserved less as a category and more as a gap, the distance between what a family needs and what actually exists for them. I wrote about why that distinction matters and where it changes how we actually help. The link is in the first comment.

I have used the word "underserved" for years, in conversations and meetings all over the country. For over a decade, my husband Robert Ostrea, MBA and I ran our Little Miss Hannah Foundation, serving hundreds of Southern Nevada families raising children with medically complex and rare conditions. Th...

07/21/2026

One of my rare mom friends built the only patient organization in the world for her child's incredibly ultra-rare disease. After years of nothing, her families finally have clinical trials.

You would think that is the happy ending. It is not, and what comes after is the part of I cannot stop thinking about.

With her permission, I wrote about what happens to the smallest communities when research finally arrives, and why getting there is only the start of the race.

https://www.linkedin.com/pulse/she-built-from-nothing-what-happens-when-research-carrie-ostrea-mba-escxc/

05/28/2026

Many of you have known me through this work for a long time, but most of you never saw the day it began, the day a geneticist told my husband and me that our seven-month-old daughter Hannah had a rare disease and we should "take her home and love her."
I have spent the seventeen years since thinking about how the delivery of her diagnosis affected me, and what I wish someone had said to us instead.

I finally wrote it down. It is for the parents just starting on this road, the ones who have heard "rare disease" about their child and have no idea what comes next.

https://www.linkedin.com/pulse/geneticists-office-what-one-tells-you-after-rare-carrie-ostrea-mba-ahkkc/

If you know a family at the beginning of this road, please send it to them. That is who I wrote it for.

My youngest child, Hannah, was seven months old the day my husband, Robert Ostrea, MBA, and I sat across the desk from a geneticist at one of the top children's hospitals in the US. The path we had to take had been long.