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.

Hereditary Disease Foundation

601 West 168th Street, Suite 54
New York, NY 10032
Tel: 212-928-2121
Fax: 212-928-2172

Non-profit basic science organization dedicated to the cure of genetic disease. All publicly donated funds are directed toward the support of biomedical research.

Hereditary Neuropathy Foundation, Inc

401 Park Avenue South
10th Floor
New York, NY 10016
Tel: 855-HELPCMT (435-7268); 212-722-8396

Dedicated to raising awareness, funding innovative research and improving quality of life for those with Charcot-Marie-Tooth (CMT) disorder, their families, and caregivers by offering medical information to help manage the CMT as well as emotional support.

HHV-6 Foundation

1482 East Valley Road
Suite 619
Santa Barbara, CA 93108
Tel: 888-530-6726
Fax: 800-645-6950

Nonprofit organization that encourages scientific exchange among scientists and provides pilot grants for promising scientific and clinical research related to human herpesvirus 6 (HHV-6).

Hide and Seek Foundation for Lysosomal Storage Disease Research/SOAR

6475 East Pacific Coast Highway
Suite 466
Long Beach, CA 90803
Tel: 844-762-7672
Fax: 818-762-2502

Nonprofit that raises awareness and supports research to find treatments and cures for lysosomal disorders.

Hope for Hypothalamic Hamartomas (Hope for HH)

P. O. Box 721
Waddell, AZ 85355

Provides information and support to hypothalamic hamartoma (HH) patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and a cure.


14425 Coachway Drive
Centreville, VA 20120
Tel: 703-543-8131; 804-754-4455

Human Brain and Spinal Fluid Resource Center

)W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg 115, Room 130
Los Angeles, CA 90073
Tel: 310-268-3536; Pager 310-389-5199
Fax: 310-268-4768

Human Growth Foundation

997 Glencove Avenue
Suite 5
Glenhead, NY 11545
Tel: 800-451-6434
Fax: 516-671-4055

Voluntary, non-profit organization dedicated to helping medical science better understand the process of growth.

Hunter's Hope Foundation[A Leukodystrophy Resource]

P.O. Box 643
21 Princeton Plaza, Suite 12
Orchard Park, NY 14127
Tel: 716-667-1200; 877-984-HOPE (4673)
Fax: 716-667-1212

Fosters awareness about Krabbe disease and other leukodystrophies, works to promote early detection through newborn screening, provides information and service linkages to families, and funds research efforts to identify new treatments and therapies, and ultimately, a cure.

Huntington's Disease Society of America

505 Eighth Avenue
Suite 902
New York, NY 10018
Tel: 212-242-1968; 800-345-HDSA (4372)
Fax: 212-239-3430

Dedicated to finding a cure for Huntington’s Disease while providing support and services for those with HD and their families.