During the 2015 International Vasculitis Symposium we had the opportunity to connect with patients and their families. One of the questions we received about joining the Vasculitis Patient-Powered Research Network most often was about data security.
We provide detailed information about the security of your data and how it will be used on our website at: http://www.vpprn.org/Privacy#data
Interested in joining this Research Network and being an active part of research into Vasculitis? How can you help? Funny you should ask. Join the V-PPRN (Vasculitis Patient Powered Research Network). I find it kinda fun if you do it through their portal called V-Bold. Then it seems more fun and you can earn ‘points’ to get some of that cool SWAG you saw from the convention and you can even get enough points by just answering surveys about how you feel or about a recent flare that you get to have a one on one conversation with a researcher (kinda cool…).