Rob Maloney: Building Visibility for Bleeding Disorders in Rural Georgia
Rob Maloney, Chief Executive Officer of Hemophilia of Georgia, shared on LinkedIn:
”Every so often I’ll see a report that shows a county in Georgia with ‘zero’ people living with hemophilia.
I don’t believe it.
Not because data is useless.
Because rare disease doesn’t always show up where you expect it to. And mild cases can hide for a long time.
- Sometimes people are managing symptoms without a name for them.
- Sometimes a family has adapted so thoroughly that they assume what they’re experiencing is normal.
- Sometimes they’ve been told, ‘You’ll be fine,’ without anyone asking the next question.
And sometimes they’re receiving care in places that don’t specialize in bleeding disorders, so the condition never becomes visible to the larger support ecosystem.
That’s one of the reasons I’m choosing to be more public here.
Not to promote myself. To make sure the door is easier to find.
If you’re a provider in rural Georgia, a school nurse, a dentist, a primary care clinician, or a parent who has ever wondered whether a bleeding pattern seems off, I want you to know there is a community and a team that can help.
A rare diagnosis is hard enough. It shouldn’t also come with isolation.
Part of our job at Hemophilia of Georgia is caring for the families we know.
Another part is going looking for the ones we don’t.”
Stay updated with Hemostasis Today.
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