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.


Genetic and Rare Disease Information Center

National Center for Advancing Translational Sciences
P.O. Box 8126
Gaithersburg, MD 20898-8126
Tel: 888-205-2311


Genetic and Rare Diseases Information Center (GARD)

National Institutes of Health, DHHS
P.O. Box 8126
Gaithersburg, MD 20898-8126
Tel: 888-205-2311


Global DARE Foundation

P.O. Box 865
Windham, ME 04062

Provides worldwide awareness and better quality of life for people diagnosed with Adult Refsum Disease. Supports research, education, awareness, and advocacy.


Global Foundation for Peroxisomal Disorders

P.O. Box 33238
Tulsa, OK 74135
Tel: 347-470-4373
Fax: 918-516-0227

The mission of the GFPD is to help children and families faced with a Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder (PBD-ZSD) diagnosis and to assist family members and professionals through educational programs, research, and support services.


Hannah’s Hope Fund

19 Blue Jay Way
Rexford, NY 12148
Tel: 518-275-5359

Nonprofit charity whose mission is to raise funds to support the development of a treatment and cure for GAN, and to be the resource for doctors, scientists and families world-wide.


Harvard Brain Tissue Resource Center

McLean Hospital
115 Mill Street
Belmont, MA 02478
Tel: 800-272-4622
Fax: 617-855-3199


Hazel K. Goddess Fund for Stroke Research in Women

785 Park Road, #3E
New York, NY 10021

Non-profit organization that focuses on critical issues specific to stroke in women, including research, prevention, treatment, education, and advocacy.


Health Resources and Services Administration (HRSA) Information Center

U.S. Department of Health and Human Services
Parklawn Bldg., 5600 Fishers Lane
Rockville, MD 20857
Tel: 888-Ask-HRSA (275-4772)


Heart Rhythm Society

1325 G Street, N.W.
Suite 400
Washington, DC 20005
Tel: 202-464-3400
Fax: 202-464-3401

Nonprofit organization dedicated to reducing death and disability due to heart rhythm disorders, such as atrial fibrillation.


HEATH Resource CenterThe George Washington University

2134 G Street, NW
Washington, DC 20052
Tel: 202-973-0904 ; 800-544-3284
Fax: 202-994-3365

National clearinghouse on postsecondary education for individuals with disabilities. Serves as an information exchange resource for educational support services, policies, procedures, adaptations, and opportunities at American campuses, vocational-technical schools, and other postsecondary training entities.

Pages