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.


Brain Tumor Society

124 Watertown Street
Suite 2D
Watertown, MA 02472-2500
Tel: 617-924-9997; 800-770-TBTS (8287)
Fax: 617-924-9998

National non-profit providing resources and services to patients, survivors, friends, and professionals. Also funds basic science and translational brain tumor research.


Brave Kids [For Children With Special Needs]

1825 K Street NW
Suite 600
Washington, DC 20006
Tel: 800-872-5827

Non-profit organization that serves the needs of children with chronic and life-threatening illnesses and disabilities. Provides a comprehensive directory of health services, relevant medical information from healthcare professionals and message boards for children with special needs. Brave Kids also provides educational outreach and family resource centers to assist parents in locating healthcare resources for their ill children.


BridgeMar Research Foundation

P.O. Box 341
Crete, IL 60417
Tel: 708-672-7599

Non-profit organization dedicated to raising money to fund research into the BridgeMar Syndrome and undiagnosed childhood genetic disorders.


BrightFocus Foundation

22512 Gateway Center Drive
Clarksburg, MD 20871
Tel: 1- 800-437-2423
Fax: 301-258-9454

Non-profit charitable organization dedicated to funding research and educating the public on Alzheimer's disease, glaucoma, and macular degeneration.


Canavan Disease Research

P.O. Box 5823
Buffalo Grove, IL 60089
Tel: 800-833-2194

Non-profit organization that funds research, works to raise public awareness, and offers services in support of families affected by Canavan disease.


Canavan Foundation, Inc.

450 West End Avenue
#6A
New York, NY 10024
Tel: 212-873-4640; 877-4-CANAVAN (422-6282)
Fax: 212-873-7449

Works to educate target population about genetic screening available for Canavan disease and other Jewish genetic diseases, and supports research to find a treatment and cure for Canavan disease.


Canavan Research Foundation

88 Route 37
New Fairfield, CT 06812
Tel: 203-746-2436
Fax: 203-746-3205

All volunteer non-profit organization that funds research leading to treatments and or a cure for diseases of the brain. Currently funds research in gene therapy, stem cell therapy, and metabolic approaches. Offers information and sponsors parent support programs.


Cancer Care

275 Seventh Avenue
New York, NY 10001
Tel: Business: 212-712-8400; Services: 800-813-HOPE (4673)
Fax: 212-712-8495

Provides free professional support to people with cancer, family members, loved ones, and the bereaved, all across the country. Services include: counseling, support groups, educational programs, publications, and financial assistance.


Caregiver Action Network (formerly National Family Caregiver Association)

1130 Connecticut Avenue, NW
Suite 500
Washington, DC 20036
Tel: 202-454-3970

Grassroots organization dedicated to supporting and improving the lives of America's family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones.


Carter Centers for Brain Research in Holoprosencephaly

c/o Texas Scottish Rite Hospital P.O. Box 190567
2222 Welborn Street
Dallas, TX 75219-9982
Tel: 214-559-8411; 800-241-1121 (x8411)
Fax: 214-559-8383

Collaborative initiative created to gather, analyze, and share information about HPE. Maintains an international registry and an ongoing HPE database. Supports and conducts research and maintains a network of Centers of Excellence.

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