Marianne Vennitti

Why do I participate in research?

“As a patient advocate and admin of the Cryoglobulinemia community, I want you to know that research is happening for our rare disease, and your voice matters in it. For conditions like Cryo, progress only happens when patients share what they’re living through. That’s how we move from unanswered questions to real understanding, from feeling alone to making a real impact.

One thing I’ve come to realize is that if we want better care, more awareness, and real progress for the future, we need research. That’s why I joined the Vasculitis Patient-Powered Research Network (VPPRN). It’s a simple but powerful way to make a difference. By sharing our health experiences, we help researchers better understand what it’s really like to live with Cryo—and that knowledge can lead to better treatments and stronger support for all of us.

And the best part? It’s patient-powered, which means our voices help shape the research. We’re not just subjects in a study—we’re partners. Doing our part in research isn’t just helpful—it’s essential.

I’d love for you to join me in the VPPRN—it’s an easy way to help change how Cryo is understood. It only takes a few minutes, just four times a year, to make a real difference. I hope you’ll join me. You’re not alone in this—we’re in it together, and your voice matters“

-Marianne Vennitti