I have used the word “underserved” for years, in conversations and meetings all over the country. For over a decade, my husband Robert and I ran our Little Miss Hannah Foundation, serving hundreds of Southern Nevada families raising children with medically complex and rare conditions. That work taught me that underserved is a much bigger, messier word than the way we use it.
Most of the time, when we say “underserved,” we mean a category: rural, low-income, a language other than English, or far from a center of care. Those are real. But underneath the label is a gap, the distance between what a family needs and what actually exists for them. It is never just a group you point at. It is always underserved in something, compared to something.
Through our foundation, I watched that gap take a dozen different shapes. Sometimes it was the family whose insurance would not cover the one piece of equipment that would have changed their daily life. Sometimes it was the sibling quietly going under while a household’s attention went to the child who was sick. I met families twenty minutes from a hospital with no way to get there, no vehicle and no money for a special-needs taxi. They rarely fit one tidy box. Some of the most underserved never asked us for a thing, because they had learned to absorb the gap and go quiet. Silence from a family is not the same as that family being served.
This is the kind of underserved I care most about, the gap sitting in someone’s living room today. It rarely fits one clean category. Usually it is several categories tangled together.
Almost everyone I know in rare disease feels the pull to help the families being left behind. What stops us is not a lack of caring. It is that a word this big gives you nowhere to begin, and the road to doing something feels overwhelming.
That first step is smaller than the word makes it sound. We cannot do much for “the underserved” as a category, but we can do a great deal for one family who cannot get to clinic, one sibling nobody is checking on, one parent making sense of a diagnosis in a language that is not their own, one family without reliable internet, when so much of finding care now happens online, or one child whose nearest specialist is a state away. Naming the specific gap is what turns caring into help, and it keeps us honest about the fact that the people who use the word are usually not the ones living it.
Here is what I would love to hear from you. In your corner of rare disease, what does “underserved” actually look like, and what family situation has stuck with you, the kind that shows their struggle is one piece of a much bigger puzzle we need to work out?
Let’s talk about it. When we name the real gaps out loud, we make it easier for the people who want to help to know where to begin.
First published on LinkedIn, June 30, 2026.
These views are my own, written as a rare disease parent and advocate, and do not represent any employer or organization I work with.
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