Rob Maloney: Normalcy Is Not A Small Thing In Rare Disease
Rob Maloney, Chief Executive Officer of Hemophilia of Georgia, shared on LinkedIn:
”I’ve come to believe that one of the most powerful forms of care we offer isn’t a procedure or a prescription.
It’s belonging.
That’s why our camp matters so much.
To an outsider, camp can look like a nice program. Something optional. Something ‘extra.’
For many kids with hemophilia or bleeding disorders, it’s the first time in their life they’re in a place where they don’t feel different.
They see other kids who understand infusion.
They watch older campers who are confident and capable.
They realize there are adults living full lives with the same condition.
And something shifts internally.
They stop feeling like the exception. They stop feeling like the explanation.
Camp creates normalcy. And normalcy is not a small thing in rare disease.
It helps a child imagine a future that isn’t defined only by caution and limitation.
It gives parents a glimpse of what’s possible. It builds relationships that last far beyond a week in the summer.
Medicine keeps people alive.
Community helps them live well.
That’s why we protect it. That’s why we invest in it.
That’s why we keep showing up for it.”
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