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 MPS Society, Inc.

PO Box 14686
Durham, NC 27709-4686
Tel: 877-MPS-1001; 919-806-0101
Fax: 919-806-2055

Dedicated to finding cures for mucopolysaccharidosis (MPS) and related diseases. Provides hope and support for affected individuals and their families by sponsoring research, advocacy, and awareness programs.

National Multiple Sclerosis Society

733 Third Avenue
3rd Floor
New York, NY 10017-3288
Tel: 800-FIGHT-MS (800-344-4867)
Fax: 212-986-7981

Funds research, helps families stay together, provides accurate and up-to-date information, helps with employment issues, offers free counseling, runs self-help groups, advocates for people with disabilities, and provides referrals to medical professionals.

National NeuroAIDS Tissue Consortium

401 N. Washington Street
Suite 700
Rockville, MD 20850
Tel: 866-668-2272; 301-251-1161 (x186)
Fax: 301-576-4597

Provides tissue for AIDS-related research through a banking network of centers.

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

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