Rob Maloney: Rare Disease Requires Relational Care
Rob Maloney, Chief Executive Officer of Hemophilia of Georgia, shared a post on LinkedIn:
“One thing I’ve learned working in the bleeding disorders community is this:
Most people only see the emergency.
They see the ER visit. The surgery. The diagnosis. The infusion.
What they don’t see is the vigilance.
The constant awareness families carry every single day.
Parents thinking through:
- Can my child play this sport?
- What happens if they hit their head?
- Did we pack medication?
- Does the school know what to do?
- Will insurance approve this again next year?
That kind of vigilance changes people.
Not always dramatically. Sometimes quietly.
It lives in the background of ordinary life.
And honestly, I think that’s one of the most misunderstood parts of rare disease care.
The clinical side matters deeply. But so does the emotional weight families carry for years.
That’s why our work at Hemophilia of Georgia has never been just about medication.
It’s about helping families breathe again.
Sometimes that looks like a nurse coordinating care before surgery.
Sometimes it’s a social worker helping a parent navigate insurance after a job loss.
Sometimes it’s camp, where a child gets to feel normal for the first time in a long time.
And sometimes it’s simply answering the phone when a family is overwhelmed and doesn’t know what to do next.
Healthcare systems are very good at episodic care.
But rare disease requires relational care.
Because these families are not managing a moment.
They’re managing a lifetime.
One of the things I’m most proud of at Hemophilia of Georgia is that we’ve built an organization that understands that difference.
Not perfectly. But intentionally.
And for the families we serve, that intentionality matters.”
Proceed to the video attached to the post.
Other posts featuring Rob Maloney on Hemostasis Today.
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Oct 8, 2026, 04:28Jeff Molter: Electrophysiological PIEZO1 Analysis Advances Diagnosis in Hereditary Xerocytosis
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Oct 8, 2026, 04:23Barbara Adams Krolak: Women and Blood Clots Are We Missing the Warning Signs
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Oct 8, 2026, 04:10Rutendo Muzambi: Hospital Admission Patterns and Care Disparities in Sickle Cell Disease
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Oct 8, 2026, 03:50Olfat Berro: Redefining the Future of Haemophilia A
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Oct 8, 2026, 03:35Tasnia Tarana: Heavy Menstrual Bleeding When the Cause Is Not in the Uterus
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Oct 8, 2026, 03:28Kian Haseli: Electrophysiological PIEZO1 Analysis Advances Diagnosis in Hereditary Xerocytosis
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Oct 8, 2026, 03:20Sthanu Subramanian: Leukopenia in Sepsis A Marker of Severe Disease
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Oct 7, 2026, 16:44Amor Salah: 2026 NCS/SCCM Guidelines for Managing Antithrombotic-Associated ICH
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Oct 7, 2026, 16:04NETs in Thrombosis: From Mechanism to Therapeutic Target