VF in the News

The Vasculitis Patient-Powered Research Network (V-PPRN): Conducting Studies to Improve Care for Vasculitis Patients

The goal of the Vasculitis Patient-Powered Research Network’s (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 Challenge

All the different types of vasculitis are rare diseases – this makes it especially hard to do research because it is difficult to find enough patients for research studies, patients are spread out geographically, and it is hard to get health information from physicians to researchers.

The Solution

Vasculitis is rare but vasculitis research doesn’t have to be! The V-PPRN will enroll more patients than ever studied in the past, from all parts of the country, and collect data on-line to break down barriers and involve patients in the research process so health information is easily shared with researchers.

Who Can Join the V-PPRN?

You can join the V-PPRN if:

• You are a patient with vasculitis
• You are the parent of a child with vasculitis
• You are the caregiver of an adult patient with vasculitis
• You have regular access to the Internet
• A strong English proficiency. The V-PPRN forms are currently provided in English and require a strong English proficiency.

Join the Network

• As a patient, you will be a partner with investigators and clinicians in research and care.
• You contribute your disease experience by providing patient-reported data as well as electronic health data.
• Together, we are making vasculitis research happen now!
• Better studies, better treatments, because of you! Join the www.vpprn.org today!