Patient Organizations


This listing is not intended to be a comprehensive listing of all not-for-profit health agencies in the United States, nor does inclusion of any particular organization imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information useful to individuals nationally, and for this reason we have not included many local groups that offer valuable assistance to patients and their families within a limited geographic area. Many of the organizations listed in this directory have information available to the public on the World Wide Web.


University of Maryland Brain and Tissue Bank

University of Maryland Dept. of Pediatrics
655 West Baltimore Street, 13-013 BRB
Baltimore, MD 21201-1559
Tel: 800-847-1539
Fax: 410-706-0020

Collects, stores, and distributes brain and other tissues for purposes of research to improve understanding, care, and treatment of individuals with developmental disorders.


Vascular Birthmarks Foundation

P.O. Box 106
Latham, NY 12110
Tel: 877-VBF-4646 (823-4646)

Provides support and resources for children and adults born with hemangiomas, port wine stains, and other vascular birthmarks.


Vestibular Disorders Association (VEDA)

P.O. Box 13305
Portland, OR 97213-0305
Tel: 800-837-8428
Fax: 503-229-8064

Non-profit organization that provides information and support to people with inner-ear balance disorders, including Meniere's disease and positional vertigo.


VHL Alliance

1208 VFW Parkway
Suite 303
Boston, MA 02132-4344
Tel: 617-277-5667; 800-712-8712
Fax: 858-712-8712

Dedicated to improving the diagnosis, treatment, quality of life, and ultimately a cure for individuals and families affect by von Hippel-Lindau and other forms of cancer. Provides education and support through brochures, handbook, newsletters, online support groups, and 24-hour hotline. Offers competitive research.


Wake Up Narcolepsy

P.O. Box 60293
Worcester, MA 01606
Tel: 774-364-4965


Well Spouse Association

63 West Main Street
Suite H
Freehold, NJ 07728
Tel: 800-838-0879; 732-577-8899
Fax: 732-577-8644

International non-profit, volunteer-based organization whose mission is to provide emotional support to, raise consciousness about, and advocate for the spouses/partners of the chronically ill and/or disabled.


Williams Syndrome Association

570 Kirts Blvd
Suite 223
Troy, MI 48084
Tel: 248-244-2229; 800-806-1871
Fax: 248-244-2230

Non-profit tax-exempt corporation that works to enrich the lives of individuals with characteristics of Williams syndrome.


Wilson Disease Association

5572 N. Diversey Blvd.
Milwaukee, MI 53217
Tel: 414-961-0533; 866-961-0533
Fax: 414-962-3886

All-volunteer organization that strives to promote the well-being of patients with Wilson Disease and their families and friends.


World Headache Alliance

208 Lexington Road
Oakville
Ontario, CANADA L6H 6L6
Tel: 905-257-6229
Fax: 905-257-6239


World Health Organization

Avenue Appia 20
1211 Geneva 27
Switzerland,
Tel: (+ 41 22) 791 21 11
Fax: (+ 41 22) 791 3111

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