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.


Batten Disease Support and Research Association

2780 Airport Drive, Suite 342
Columbus, OH 43219
Tel: 800-448-4570
Fax: 866-648-8718

International support and research networking organization for families of children and young adults with Batten Disease. Sponsors education, advocacy, and support programs. Funds research, and sponsors a tissue donation program.


Benign Essential Blepharospasm Research Foundation

637 North 7th Street Suite 102
P.O. Box 12468
Beaumont, TX 77726-2468
Tel: 409-832-0788
Fax: 409-832-0890

Works to undertake, promote, develop, and carry on the search for the cause and a cure for benign essential blepharospasm and other related disorders and infirmities of the facial musculature.


Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane
Suite 104
Orlando, FL 32814
Tel: 407-895-0802

Non-profit organization that offers parents and expectant parents information about specific birth defects, their causes and treatments, support group referrals, and parent matching services. Provides information about environmental exposures that may be associated with birth defects. Sponsors the National Birth Defect Registry, a research project that collects data on birth defects and prenatal/lpreconceptual exposures of mothers and fathers.


Blast Injury Research Program Coordinating Office

Attention: MCMR-RTB
810 Schroeder Street
Fort Detrick, Maryland 21702
Tel: 301-619-9801

Department of Defense office that disseminates the latest information on medical research for the prevention, mitigation, and treatment of blast injuries.


BlazeSports America

1670 Oakbrook Druve
Suite 331
Norcross, GA 30093
Tel: 404-270-2000

BlazeSports mission is to advance the lives of children and adults with physical disabilities through sport, healthy lifestyles, and the prevention of chronic health conditions.


Brain and Tissue Bank for Developmental Disorders (FL)

University of Miami Miller School of MedicineDepartment of Pathology (R-5)
P.O. Box 016960
Miami, FL 33101
Tel: 800-59BRAIN (592-7246)
Fax: 305-243-4086

Collects samples from patients with a variety of genetic and developmental disorders, patients with related disorders, and age-matched controls. The material is used by investigators studying diseases that affect normal brain.


Brain Aneurysm Foundation

269 Hanover Street, Building 3
Hanover, MA 02339
Tel: 781-826-5556; 888-BRAIN02 (272-4602)

The Brain Aneurysm Foundation is the nation's only nonprofit organization solely dedicated to providing critical awareness, education, support and research funding to reduce the incidence of brain aneurysms.


Brain Injury Association of America, Inc.

1608 Spring Hill Rd
Suite 110
Vienna, VA 22182
Tel: 703-761-0750; 800-444-6443
Fax: 703-761-0755

Non-profit organization dedicated to people with brain injury and their families. Offers research, education, and advocacy programs through a national office, network of state affiliates, support groups, and a helpline.


Brain Injury Resource Center

P.O.Box 84151
Seattle, WA 98124
Tel: 206-621-8558
Fax: 206-329-4355

Non-profit clearinghouse founded and operated by head injury activists. Offers information, discussion groups, programs for building advocacy and self-care skills, and referrals to additional information and resources.


Brain Resources and Information Network (BRAIN)

National Institute of Neurological Disorders & Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: 800-352-9424
Fax: 301-402-2186

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