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.


National Niemann-Pick Disease Foundation, Inc.

P.O. Box 49
Ft. Atkinson, WI 53538
Tel: 920-563-0930; 877-CURE-NPC (287-3672)
Fax: 920-563-0931

International nonprofit organization made up of parents, medical and educational professionals, friends, relatives, and others.


National Oral Health Clearinghouse

1 NOHIC Way
Bethesda, MD 20892-3500
Tel: 301-402-7364
Fax: 301-480-4098


National Organization for Disorders of the Corpus Callosum

PMB 363
18032-C Lemon Drive
Yorba Linda, CA 92886
Tel: 714-747-0063
Fax: 714-693-0808

This organization works to enhance the quality of life and promote opportunities for individuals with disorders of the corpus callosum and to raise the profile, understanding, and acceptance of these disorders through research, education, advocacy, and networking.


National Organization for Rare Disorders (NORD)

55 Kenosia Avenue
Danbury, CT 06810
Tel: 203-744-0100; Voice Mail: 800-999-NORD (6673)
Fax: 203-798-2291

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.


National Organization of Social Security Claimants' Representatives

560 Sylvan Avenue
Suite 2200
Englewood Cliffs, NJ 07632
Tel: 201-567-4228
Fax: 201-567-1542

Association of over 3,300 attorneys and paralegals who represent Social Security and Supplemental Security Income claimants.


National Organization on Disability

77 Water Street
Suite 204
New York, NY 10005
Tel: 646-505-1191

Promotes the full and equal participation of America's 54 million men, women and children with disabilities in all aspects of life. Works to raise disability awareness and offers information and referrals.


National Patient Travel Center

c/o Mercy Medical Airlift
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455
Tel: 800-296-1217; 757-318-9174
Fax: 757-318-9107


National Prevention Information Network

Centers for Disease Control and Prevention, DHHS
P.O. Box 6003
Rockville, MD 20849-6003
Tel: 301-562-1098; 800-458-5231
Fax: 888-282-7681


National Rehabilitation Information Center (NARIC)

8400 Corporate Drive
Suite 500
Landover, MD 20785
Tel: 301-459-5900; 800-346-2742; 301-459-5984 (TTY)
Fax: 301-562-2401


National Respite Network and Resource Center

800 Eastowne Drive
Suite 105
Chapel Hill, NC 27514
Tel: 919-490-5577 (x222)
Fax: 919-490-4905

Information and referral service that assists and promotes the development of quality respite and crisis care programs; helps families locate respite and crisis care services in their communities; and sponsors advocacy and awareness efforts concerning respite care.

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