We are pleased and honored to be affiliated with the following:
National Organization of Rare Diseases (NORD)
National Organization of Rare Diseases (NORD) is an organization that is a non profit organization helping patients with rare diseases. NORD also assists patient organizations that serve rare and orphan diseases. NORD maintains a directory and database of patient support groups and provides information on rare diseases legislation, and valuable resources for rare and orphan diseases. http://www.rarediseases.org
Churg Strauss Syndrome Association
The Chug Strauss Syndrome Association provides assistance to CSS patients and works towards raising the public awareness about CSS. Some patients with CNSV also have overlapping syndromes. Some CNSV patients also have CSS and have benefited from their assistance and information. http://www.CSSassociation.org
Invisible Disabilities Advocate
The Invisible Disabilities Organization works towards raising awareness of the numerous invisible disabilities caused by chronic diseases. CNSV patients often do not "look" sick, yet suffer from many debilitating neurological and cognitive effects of the disease process.
http://www.myida.org/
RPNVC group 
Research into Polyarteritis Nodosa and related Vasculitis Conditions group. http://www.rpnvc.org/index.html
The European Vasculitis Study Group (EUVAS)
EUVAS is an informal group of doctors interested in the care of patients with primary systemic vasculitis and is open to any interested doctor. http://www.vasculitis.org/
Friedrich Wegener Stichting 
Dutch Wegener's Granulomatosis site http://www.vasculitis.nl/
OTHER HELPFUL LINKS
The following are resources that CNSV patients, families, and caregivers may find beneficial.
Hah Originals
Hah Originals provides medical alert jewelry that is vital as well as aesthetically pleasing. Hah originals provide assistance for repairs and alterations their medical jewelry as well as outstanding customer service. http://www.hahoriginials.com
Medical Devices and Nutritional Assistance
Research and information on vitamins and minerals www.vitamins-nutrition.org
Wheelchairs and Mobility Devices
Active Forever offers an array of products from wheelchairs to house-ware products in catalogues and on line: www.ActiveForever.com
Vision Devices
Available from Active Forever and Independent Living Products
Another helpful agency to contact is your local Association for The Blind and Visually Impaired (ABVI/Goodwill)
http://visionconnection.org
Family Caregiver Alliance
http://www.caregiver.org
E-mail: info@caregiver.org
Telephone: (415) 434-3388 (headquartered in California)
National Family Caregivers Association
http://www.thefamilycaregiver.org
E-mail: info@thefamilycaregiver.org
Telephone: (301) 942-6430 (headquartered in Maryland)
Well Spouse Association
http://www.wellspouse.org
E-mail: info@wellspouse.org
Toll-free: (800) 838-0879
The National Respite Locator Service
http://www.respitelocator.org
E-mail: mmathers@chtop.org
Telephone: (919) 490-5577 (headquartered in Chapel Hill, NC)
Disability Information
Government Disability program information
http://www.ssa.gov/disability/
www.socialsecurity.gov
www.disabilityinfo.gov
www.upjohninst.org (Not governmental, but helpful)
Financial Information
Information about medication assistance is available at
http://www.needymeds.com
http://www.rxoutreach.com/en/
https://www.helpingpatients.org/Intro.php
To Read About CNSV and CNS Related Diseases
Central Nervous System Vasculitis discussed by Johns Hopkins
http://vasculitis.med.jhu.edu/typesof/cns.html
What You Need to Know About Central Nervous System Vasculitis
http://www.clevelandclinic.org/arthritis/treat/facts/cns.htm
CNS vasculitis.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14766421
NATIONAL INSTITUTES OF HEALTH(NIH)
General Information on Vasculitis
http://www.ninds.nih.gov/health_and_medical/disorders/vasculitis_doc.htm
Diagnosing intracranial vasculitis: the roles of MR and angiography
http://www.ajnr.org/cgi/content/abstract/15/2/317
Primary Angiitis of the Central Nervous System
http://www.clevelandclinicmeded.com/diseasemanagement/rheumatology/pacns/pacns.htm
Granulomatous angiitis of the central nervous system.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=3762479
Women And Autoimmune Disease: The Mysterious Ways Your Body Betrays Itself
http://www.amazon.com/exec/obidos/tg/detail/-/0060081503/102-9823573-2425717?v=glance&st=*
List of agencies that can help with transportation to medical faculties and places to stay while being treated. Mercy Medical Airlift