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.

LGS Foundation

80 Orville Drive, Suite 100
Bohemia, NY 11716
Tel: 718-374-3800

LGS Foundation is a not-for- profit organization dedicated to providing information about Lennox-Gastaut Syndrome, a rare and severe form of childhood onset epilepsy, while raising funds for research, programs, and services for individuals living with LGS, and their families.

Lissencephaly Network

10408 Bitterroot Court
Ft. Wayne, IN 46804
Tel: 260-432-4310
Fax: 260-432-4310

Non-profit organization that serves children and families affected by lissencephaly and other neuronal migration disorders.

Living Bank

P.O. Box 6725
Houston, TX 77265
Tel: 800-528-2971

Non-profit donor education organization. Maintains computerized records of donor data for future retrieval during emergencies.

Lowe Syndrome Association

P.O. Box 417
Chicago Ridge, IL 60415
Tel: 216-630-7723

Provides information, fosters communication among families, and supports medical research on Lowe syndrome. Activities include conferences, a research grant program, a newsletter and other publications.

Lupus Foundation of America

2000 L Street, N.W.
Suite 710
Washington, DC 20036
Tel: 202-349-1155; 800-558-0121
Fax: 202-349-1156

Nonprofit voluntary health organization working to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure of lupus.

Lupus Research Alliance

275 Madison Avenue, 10th Floor
New York, NY 10016
Tel: 212218-2840; 800-867-1743

Lymphoma Research Foundation

Wall Street Plaza
88 Pine Street, Suite 2400
New York, NY 10005
Tel: 212-349-2910; 800-500-9976

Offers up-to-date information, support, and education programs to patients, caregivers, and professionals, including printed materials, conferences and symposiums, webcasts, and teleconferences. Other services include a nationwide Lymphoma Support Network peer support program, Helpline and Clinical Trials Information Service and limited financial assistance. Funds lymphoma research.

MAAP Autism Spectrum Coalition

P.O. Box 524
Crown Point, IN 46308

Provides information, advice, and networking to families of more advanced individuals affected by the autism spectrum, including autism, Asperger syndrome, and pervasive developmental disorder. Publishes a quarterly newsletter.

Magic Foundation [Growth Disorders]

4200 Cantera Drive, #106
Warrenville, IL 60555
Tel: 708-383-0808; 800-3-MAGIC3 (362-4423)
Fax: 708-383-0899

National nonprofit organization dedicated to helping children whose physical growth is affected by a medical problem.

Make-A-Wish Foundation of America

1702 E. Highland Avenue
Suite 400
Phoenix, AZ 85016
Tel: 800-722-WISH (9474); 602-279-WISH (9474)
Fax: 602-279-0855

Foundation that grants the wishes of children with life-threatening illnesses.