Kathaleen Schnur: Global Perspectives on Psychosocial Support in Hemophilia Care
Kathaleen Schnur, Licensed Clinical Social Worker at Hemophilia Center of Western Pennsylvania, shared a post on LinkedIn:
“I’m deeply honored to serve on the World Federation of Hemophilia Psychosocial Committee alongside such brilliant, passionate colleagues from across the world.
After two years of meaningful, committed work together virtually, it’s been incredibly powerful to come together in person this week at the World Congress in Kuala Lumpur.
There is something special about being in the same space sharing ideas, strategies, and experiences, while also holding the reality of the profound disparities in access to care and medication that still exist globally.
I had the privilege of speaking about the emotional and mental impact of pain, and the importance of supporting individuals and families in the very first emotional moments following diagnosis.
Spaces that are often overlooked, yet deeply formative.
Tomorrow, I’ll have the opportunity to chair what promises to be an engaging and important session focused on the impact on parents and caregivers—the hidden patients whose experiences so often go unseen.
One moment from this week will stay with me.
Walking back to my hotel this evening, an attendee approached me, visibly emotional, and thanked me for my talk. He shared that it felt like I was speaking directly to him as though I knew his experience.
Those are the moments that ground this work.
The reminders that beyond data, beyond systems, beyond global strategy.
This is about people feeling seen, understood, and less alone.”
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