Vasculitis Patient Support Groups

• American Behcet’s Disease Association
• Churg Strauss Syndrome Association
• Friedrich Wegener Stichting
• German Vasculitis-Patient-Self-Help-Group
• Groupe Française d'Etude des Vascularites
• The PAN Support Network
• Wegener’s Granulomatosis Support Group of Australia
• Wegener’s Granulomatosis Support Group of Canada  

General Patient/Caregiver Support Organizations

• American Autoimmune Related Diseases Association (AARDA)
• National Diabetes Association
• National Family Caregivers Association
• National Kidney Foundation
• National Organization of Rare Diseases (NORD)
• Visiting Angels Living Assistance Services
• Patient Power Info

International Medical Professional Associations

• American Academy of Otolaryngology
• American College of Rheumatology Provides alphabetical and geographical list of international members
• American Society of Nephrology Provides information on kidney function
• American Thoracic Society (ATS) Provides excellent information on pulmonary issues

NIH Launches Undiagnosed Diseases Program: Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.

Bruce's Website: This site is maintained by a patient with vasculitis and is a wonderful resource.

Andrew McLean's Website: This site used to just house
patient stories but was upgraded to a forum in May. There are currently 52 members witih more signing up each week.

Online Message Groups

Message groups provide online forums for patients with vasculitis and family members to ask questions and share experiences. Some message groups are disease-specific, i.e. Churg Strauss, other groups are open to all patients/family members.

The groups are free to join.  To learn more visit Yahoo groups and in the Search box enter either vasculitis or the name of the disease you are interested in.

For additional guidelines on message boards, click here.

Miscellaneous Resources

• National Institutes of Health
• Information on NIH Protocols
• National Institute of Allergy and Infectious Diseases (NIAID)
• The NIAID Fact Sheet on Wegener's Granulomatosis
• Kidney Friendly Comfort Foods

Medical Institutions

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Vasculitis Foundation Patient Handbook...