In a session that felt more like a heartfelt conversation among friends than a formal presentation, the National Bleeding Disorders Foundation (NBDF) research team opened our eyes to a powerful truth: the most valuable experts in bleeding disorders research are often the patients themselves.
Naomi Miller, Research Programs and Partnership Specialist with NBDF and Eliza VanZweden a member of the National Youth Leadership Institute (NYLI), passionately conveyed how "Lived Experience Experts" (LEEs) – individuals living with bleeding disorders – are not just subjects of research, but vital collaborators in pushing the boundaries of treatment and care.
"Every experience, every challenge, every triumph you've had is a piece of the puzzle we're trying to solve," Naomi emphasized, her eyes sparkling with conviction. The room nodded in collective understanding – who better to guide research than those navigating the daily realities of these conditions?
But it wasn't all rose-colored glasses. The team candidly addressed the elephants in the room – the fears, the time constraints, the mistrust that often keep patients from participating in research. As Eliza put it, "We get it. It's scary to step into the unknown. But that's where the magic happens."
The real magic, however, came when Nandini Pethe, Lived Experience Expert and Eliza shared their personal journeys. Their stories of transitioning from patients to advocates left many of us misty-eyed. "There were days I felt overwhelmed," Nandini admitted, "but then I'd remember – my voice could be the one that makes a difference."
As the session wound down, there was a palpable shift in the room. Eyes that had entered with uncertainty now gleamed with possibility. It was clear – in the world of bleeding disorders, every voice counts, every experience matters.
For those ready to take the leap, the Community Voices in Research (CVR) registry awaits. It's more than a database – it's a platform for change, a megaphone for the unheard, a bridge between lab coats and lived realities.
As we filed out, the chatter was electric. "Maybe my story could help," I overheard someone say. And isn't that the heart of it all? In this community, we're not just patients. We're pioneers, trailblazers, the experts of our own experiences. And together, we're writing the future of bleeding disorders care, one shared story at a time. For more information about Community Voices in Research, visit bleeding.org/CVR.
