Alliance for Cryoglobulinemia Research Partners
The Vasculitis -Patient-Powered Research Network (V-PPRN)
The V-PPRN is A partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation.
The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis. The goal of the V-PPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.
The Vasculitis Clinical Research Consortium (VCRC)
The VCRC is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis and improving the care of patients with vasculitis. Funded by the National Institutes of Health (NIH), the VCRC is part of the Rare Diseases Clinical Research Network. The operations of the VCRC are directed from Boston University the University of Pennsylvania and the eight primary VCRC Study Sites include Boston University School of Medicine, the Cleveland Clinic, the Mayo Clinic, Mount Sinai Hospital in Toronto, Ontario, St. Joseph’s Healthcare in Hamilton, Ontario, the University of Pennsylvania, the University of Pittsburgh, and the University of Utah. The mission of the Vasculitis Clinical Research Consortium is to conduct clinical research and clinical trials to learn more about these diseases with the goal of developing new and better treatments to improve the care of patients with vasculitis. We also seek to provide up-to-date information for patients to help them manage their diseases and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities.
The Vasculitis Foundation (VF)
The VF is our research and advocacy partner. They are an international organization providing education and support for Cryoglobulinemia as well as every type of vasculitis. We are stronger in numbers and because our Cryoglobulinemia community is so small it is imperative that we join as active members by sharing our stories. Through this unity, we are recognized as a community that needs support in the rare disease community. They VF has established a Research Fund for cryoglobulinemia and we are in need of your contributions to improve the lives of our patients.
