Patient Organizations

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.

United Leukodystrophy Foundation

224 North 2nd Street, Suite 2
DeKalb, IL 60115
Tel: 815-748-3211; 800-728-5483
Fax: 815-748-0844

Nonprofit voluntary health organization dedicated to providing patients and their families with information; assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness, and acting as an information source for health care providers. Promotes supports research into causes, treatments, and prevention of the leukodystrophies.

United Mitochondrial Disease Foundation

8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239
Tel: 412-793-8077; 888-317-UMDF (8633)
Fax: 412-793-6477

Promotes research for cures and treatments of mitochondrial disorders and provides support for affected families. Represents adults and children alike and continues to serve families with a variety of programs.

United Spinal Association

120-34 Queens Boulevard, #320
Kew Gardens, NY 11415
Tel: 718-803-3782; 800-962-9629
Fax: 866-387-2196

The United Spinal Association is dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. NSCIA, educates and empowers survivors of SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment.

United Spinal Association

75-20 Astoria Boulevard
East Elmhurst, NY 11370
Tel: 718-803-3782; 800-404-2898
Fax: 718-803-0414

National disability rights organization dedicated to enhancing the lives of individuals with spinal cord injury or disease by ensuring quality healthcare, promoting research, advocating for civil rights and independence, educating the public about these issues, and enlisting its help to achieve these fundamental goals.

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.