Alliance for Cryoglobulinemia Research Partners
The Vasculitis -Patient-Powered Research Network (V-PPRN)
The Vasculitis Patient-Powered Research Network (VPPRN) is a global, patient-driven research initiative committed to transforming vasculitis research through active collaboration among patients, caregivers, clinicians, and researchers. Established in 2014, the VPPRN operates under the joint leadership of the Vasculitis Foundation and the Vasculitis Clinical Research Consortium (VCRC), with funding support from the Patient-Centered Outcomes Research Institute (PCORI).
Empowering Patients in Research
At the heart of the VPPRN is the belief that patients are experts in their own experiences. By directly involving patients in all aspects of research—from study design to data interpretation—the network ensures that research priorities align with the real-world needs of those affected by vasculitis. This collaborative approach fosters studies that are both scientifically rigorous and deeply relevant to the patient community. 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 Vasculitis Clinical Research Consortium (VCRC) is a collaborative network of academic medical centers, patient advocacy organizations, and clinical research teams dedicated to advancing research and improving care for individuals affected by vasculitis.
Funded by the National Institutes of Health (NIH), the VCRC is a proud member of the Rare Diseases Clinical Research Network (RDCRN). This affiliation supports its mission to conduct high-impact clinical research and to develop more effective, targeted treatments for various forms of vasculitis.
The operations of the VCRC are coordinated through Boston University and the University of Pennsylvania, with research activities conducted across eight major study sites:
-
Boston University School of Medicine
-
Cleveland Clinic
-
Mayo Clinic
-
Mount Sinai Hospital (Toronto, Ontario)
-
St. Joseph’s Healthcare (Hamilton, Ontario)
-
University of Pennsylvania
-
University of Pittsburgh
-
University of Utah
By leveraging this integrated research infrastructure, the VCRC facilitates clinical trials and long-term studies aimed at understanding the causes, progression, and management of vasculitis. The ultimate goal is to improve diagnosis, treatment options, and patient outcomes.
In addition to its research initiatives, the VCRC is committed to providing accessible, up-to-date information for patients and caregivers. It also plays a key role in connecting patients with specialized healthcare providers, clinical studies, and vasculitis support networks.
Through collaboration, innovation, and a strong research foundation, the VCRC continues to lead efforts in transforming the future of vasculitis care.
The Vasculitis Foundation (VF)
We are proud to collaborate with the Vasculitis Foundation (VF)—our trusted partner in research and advocacy. As a leading international organization, the VF provides vital education, resources, and support for individuals affected by all types of vasculitis, including Cryoglobulinemia.
Because our Cryoglobulinemia community is small, unity is essential. By coming together, sharing our stories, and raising our voices, we amplify our presence and strengthen our impact within the broader rare disease community. There is power in numbers, and your involvement makes a real difference.
Importantly, the VF has established a dedicated Cryoglobulinemia Research Fund to advance treatment options and improve the quality of life for patients. However, we need your support. Your contributions—big or small—can directly fuel progress, drive research, and bring hope to those living with this rare and often misunderstood condition.
