Marianne Vennitti

Why do I participate in research?

“In July of 2010, I was diagnosed by the Mayo Clinic with Cryoglobulinemia Vasculitis. I was scared not knowing what tomorrow would present to me, amazed that I couldn’t readily access information on the web about Cryo, and frightened that I may never find anyone like myself diagnosed with this rare disease. In those moments of fear and despair, I made a promise to myself that I would never let another person feel lost and unsupported living with this disease.

Because of the help and support of many people and organizations, in September of 2012, the Alliance for Cryoglobulinemia was launched following the opening of 2 Cryo Facebook Support Groups. Patients were no longer alone on their rare disease journey.

As a patient advocate and admin of our community, I encourage everyone to join the Vasculitis Patient-Powered Network as I have. In order to find the answers we need to live a better quality of life, we need research and the VPPRN gives us the gateway to make that happen. It’s pretty simple. We share our health history as a person diagnosed with Cryoglobulinemia, they collect that data, and in time enough information is gathered to research the why’s and how comes. Patient Powered means we have a voice in the network to help others like us. Please join me in making a difference.”

-Marianne Vennitti