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.

American Parkinson Disease Association

135 Parkinson Avenue
Staten Island, NY 10305-1425
Tel: 718-981-8001; 800-223-2732; 877-223-3801 (Young Onset Center)
Fax: 718-981-4399

Seeks to “Ease the Burden – Find the Cure” through funding scientific research. Provides comprehensive patient/caregiver support and education.

American Sleep Apnea Association

1250 Connecticut Avenue, N.W.
Suite 700
Washington, DC 20036
Tel: 888-293-3650
Fax: 888-293-3650

Provides information about sleep apnea to the public, publishes a newsletter, and serves as an advocate for people with the disorder.

American Sleep Association

100 Cambridge Street
Suite 1400
Boston, MA 02114

The primary mission of the American Sleep Association is to improve public health by increasing awareness about the importance of sleep and the dangers of sleep disorder.

American Speech-Language-Hearing Association(ASHA)

2200 Research Boulevard
Rockville, MD 20850
Tel: 301-296-8700; 800-638-8255; TTY 301-296-5650
Fax: 301-571-0457

Professional, scientific, and credentialing association for audiologists, speech-language pathologists, and speech, language, and hearing scientists. Offers public information about a wide range of speech, language, and hearing disabilities in both children and adults.

American Stroke Association: A Division of American Heart Association

7272 Greenville Avenue
Dallas, TX 75231-4596
Tel: 888-478-7653
Fax: 214-706-5231

Offers a wide array of programs, products, and services, from patient education materials to scientific statements with cutting-edge information for healthcare professionals.

American Syringomyelia & Chiari Alliance Project (ASAP)

P.O. Box 1586
Longview, TX 75606-1586
Tel: 903-236-7079; 800-ASAP-282 (272-7282)
Fax: 903-757-7456

Non-profit organization that works to improve the lives of people with syringomyelia, Chiari malformations, and related disorders. Publishes a newsletter and offers other written information, videotapes, an annual conference, and other services.

amfAR, The Foundation for AIDS Research

120 Wall Street
13th Floor
New York, NY 10005-3908
Tel: 212-806-1600
Fax: 212-806-1601

Non-profit organization dedicated to the support of AIDS research, HIV prevention, treatment education, and the advocacy of sound AIDS-related public policy.

Angelman Syndrome Foundation

3015 E. New York Street
Suite A2, #285
Aurora, IL 60504
Tel: 630-978-4245; 800-432-6435
Fax: 630-978-7408

Works to advance awareness and treatment of Angelman Syndrome through education and information, research, and support.

Angioma Alliance

520 W. 21st Street
Suite G2-411
Norfolk, VA 23517
Tel: 866-HEAL-CCM (432-5226); 757-623-0615

Non-profit charitable organization created by people affected by cavernous angiomas. Provides education and support and promotes research.

Antiepileptic Drug Pregnancy Registry

Massachusetts General Hospital
125 Nashua Street, Suite 8488
Boston, MA 02114
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307

Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.