Canvasc MD member FORUM
Please note that ONLY medical doctors, registered as CanVasc members (first register to become CanVasc member then create a forum account - access to forum will then be granted). This is a secured and password-restricted forum.
Vasculitis Clinical Research Consortium (VCRC)
The Vasculitis Clinical Research Consortium 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. The website contain medical information for physicians, health care providers but also patients.
French Vasculitis Study Group (FVSG)
The FVSG (French Vasculitis Study Group) is a non-profit association created in 1981 by Prof. Loïc Guillevin. The FVSG's goals in the field of systemic vasculitides are to aid and promote research, diffuse updated information to doctors and patients, organize and coordinate therapeutic trials, and compile a register of doctors and investigators working in the field of vasculitis.
European vasculitis study group
European Vasculitis Study group (EUVAS) is the open collaborative research group of European physicians interested in research and education in vasculitis. The website provide some information on EUVAS activities.
The Johns Hopkin Vasculitis Center WebSite
The purpose of this Website is mainly to provide information about vasculitis for patients, including easy-to-print booklets on each of the main vasculitides, but physicians and research coordinators may also find a lot of useful information and practical tools.
Cleveland Clinic CME Website - Vasculitis
The Cleveland Clinic Center for Continuing Education has been committed to sharing a wealth of knowledge with physicians, nurses, and other medical professionals across the country and all over the world for more than 75 years. This website contains rich educational material and updates on vasculitis and vasculitis research.
RheumInfo.com is website developped by Dr. Andy Thompson & Marlene Thompson (London, ON) to provide free, honest, accurate, and reliable information for patients and physicians dealing with rheumatic disease. Many simple easy-to-use booklets on treatment, which can be given to help patients manage their treatment on a daily basis, are dowloadable.
BrainWorks is the online registry for patients with inflammatory brain disorders (CNS vasculitis) developped by Dr S. Benseler et al. The childhood version was launched in 2006, the adult version in 2015.
For patients (in addition to the last 3 websites listed above)
Join the VCRC patient registry
As part of the VCRC network, we strongly suggest and incite our patients to register to this scientific international registry (using online form or by faxing the registration form). By enrolling, you, as a patient, accept to be contacted when and if there is a study or simple survey on vasculitis in which you could participate (those studies will ONLY be VCRC approved and scientific studies or surveys).
Vasculitis Patient-Powered Research Network
A partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation. The V-PPRN is an online project that will enroll more patients than ever studied in the past, from all parts of the country (USA for the moment, Canada and other countries soon) and collect data on-line to break down barriers and involve patients in the research process so health information is easily shared with researchers.
VPPRN and a north American research group is conducting an international study on pregnancies in patients with vasculitis. Every pregnant patient with history of vasculitis can enroll directly in this online study. They will be asked on a regular basis to provide, directly online and by themselves, some medical information on their pregnancy and how they are doing. Read the information flyer HERE.
Arthritis Research Foundation
The Arthritis Research Foundation aims at raising, managing and investing funds for arthritis and related autoimmune diseases (like vasculitis) research conducted by researchers from labs and clinics across University Health Network (UHN) in Toronto (including the founders of CanVasc). Because CanVasc do not accept direct donations at present, one easy way to support our researches can be through donations to this Foundation. (Donations to the patient support groups listed below and/or directly to the Division in which you are followed for your vasculitis can be another option, if you are willing to support vasculitis research and/or CanVasc).
Patient support groups
Vasculitis Foundation Canada
Vasculitis Foundation Canada mission is to encourage and support research efforts for the cause and cure for all forms of Vasculitis. DOWNLOAD the VF Canada brochure.
The Vasculitis Foundation works to support positive change in the lives of people who live with vasculitis.
Churg Strauss Syndrome Association
The Churg Strauss Syndrome Association is a nonprofit organization dedicated to supporting and educating patients and their families who are afflicted with Churg Strauss Syndrome. The CSSA works toward raising public awareness about CSS and provides assistance in understanding the disease and treatment process.
Wegener Info and other Vasculitides
The French patient support group.
What is GPA, MPA, EGPA: the ANCA-associated vasculitides - Genentech information and educational website
Some information on ANCA-associated vasculitis with a nice animated video to explain the pathogeny of these diseases.