Other organizations and resources dedicated to educating and helping vasculitis patients
Arbeitskreis der Vaskulitis-Patienten-Selbsthilfegruppe VPS
The Vasculitis Support Group
" The working committee Vaskulitis promotes the establishing of new regional support-groups all over Germany and to make them known. Thus patients who have not yet had any contact to a VPS group can get a chance of contacting hitherto unknown sources of help nad/or information. Of course, members try to get in touch with concerned ones in Germany and other European countries."
The Vasculitis Foundation
The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis.
Mission: The Vasculitis Foundation supports and empowers patients through education, awareness and research.
"The CSSA works toward raising public awareness about CSS and provides assistance in understanding the disease and treatment process. We hope to stimulate and support research into the cause and cure of Churg Strauss Syndrome."
The Rare Diseases Clinical Research Network
The Rare Diseases Clinical Research Network was created to facilitate collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment.
The Pittsburgh Post Gazette Article: "Turning a personal tragedy into public good"
The Pittsburgh Tribune Review: "Personal Loss Results in Valuable Organization for Rare Disease Patients"
Vasculitis Research Consortium 2005: PSN represented at 2005 Congressional Briefing on Autoimmune Diseases in Washington D.C.
Vasculitis Research Consortium: PSN represented at 2005 VCRC Steering Committee Meeting in Washington, D.C.