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Multiple Sclerosis


Information Resources

For information on other neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, Maryland 20824
(800) 352-9424
www.ninds.nih.gov

In addition, a number of private organizations offer a variety of services and information that can help those affected by MS. They include:

National Multiple Sclerosis Society
733 3rd Avenue, 6th Floor
New York, NY 10017-3288
(212) 986-3240 or (800) 344-4867
http://www.nationalmssociety.org/index.aspx/

The National Multiple Sclerosis Society (NMSS) provides MS-related services and information in the United States and is a major source of funds for MS-related basic, clinical, and health policy research. Staff in the national office's Information Resource Center answer some 45,000 inquiries a year. Volunteers and staff in the Society's local chapters and branches offer information and referrals, peer support, professional counseling, loans of medical equipment, physical fitness programs, legislative advocacy, assistance obtaining benefits, employment assistance, and social or recreational events. The NMSS raises funds that support a broad research effort into the cause, prevention, and more effective treatment of MS and into the major health care policy issues that affect people with MS. The Society's educational programs provide both information services and publications. Its national publications include an array of professional/client/family educational materials and two general interest periodicals,"Inside MS" and "Inside MS Bulletin." The NMSS is a member of the International Federation of Multiple Sclerosis Societies, and can often provide referrals to sources of MS information in other areas of the world.

Multiple Sclerosis Association of America
706 Haddonfield Road
Cherry Hill, NJ 08002
(856) 488-4500 or (800) 532-7667
www.msassociation.org/

The Multiple Sclerosis Association of America (MSA) has offices in New Jersey, Colorado Springs, and Washington, D.C. It focuses primarily on mechanisms for coping with MS-related disabilities. The Association publishes a bimonthly newsletter, "The Motivator," which contains feature stories about patients, health tips, medical updates, and occasionally referral information. Educational information is available nationwide—in the New Jersey area, the Association lends equipment such as wheelchairs to patients and holds meetings of patient support groups. MSA's most recent major undertaking is a new housing complex for people disabled by MS.

Multiple Sclerosis Foundation, Inc.
6350 North Andrews Avenue
Fort Lauderdale, FL 33309
(954) 776-6805 or (800) 441-7055
www.msfacts.org

Founded in December 1986, the Multiple Sclerosis Foundation, Inc. provides educational information and supports MS research, including investigations of "alternative" or holistic therapies. The Foundation has an MS library and acts as a clearinghouse for information on the disease. Its staff can make referrals to support groups and MS research centers. Publications include a brochure on MS and a newsletter entitled "MS Focus."

Other voluntary health agencies that can provide general information on MS or symptoms associated with MS include:

National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
(203) 746-6518 or (800) 999-6673
www.rarediseases.org

NORD acts as a clearinghouse for information about rare disorders and seeks to foster communication among voluntary health agencies, the government, the pharmaceutical industry, academia, and individuals. It encourages, promotes, and supports scientific research and accumulates and disseminates information on orphan drugs and devices. NORD publishes a general organization brochure, a pamphlet entitled "Physicians Guide to NORD Services," and a newsletter, "Orphan Disease Update," which includes research and medical updates, legislative action, personal stories, and letters from readers.

National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, Minnesota 55447-4752
(763) 553-0020
www.ataxia.org/

The Foundation sponsors support groups and promotes ataxia research. Its publications include a newsletter called "Generations" that contains features, research updates, questions and answers about ataxia, and support group news. Information on exercise, a guidebook on speech and swallowing problems, a resource book of chapters and related groups worldwide, and a specialist referral guide are also available.

International Tremor Foundation
7046 W. 105th St.
Overland Park, KS 66212-1803
(913) 341-3880
(888) 387-3667
www.essentialtremor.org

The International Tremor Foundation provides patient and family services, public education materials, and referrals to support groups and physicians specializing in the treatment of essential or familial tremor. It publishes a fact sheet describing the Foundation and a quarterly newsletter containing information on research advances, questions and answers from readers, and advice on coping with tremor. The Foundation also supports neurologic research on tremor disorders.

Well Spouse Foundation
FDR Station, Box 827
New York, NY 10150
(212) 685-8815 or (800) 838-0879
www.wellspouse.org

The Well Spouse Foundation provides peer support for spouses of people with MS and other disorders and promotes individual chapter meetings. It also has advocacy representatives in several states. It publishes a quarterly newsletter containing feature and patient stories, chapter news, a "bookshelf," and coping advice.

In addition to the NINDS, there are several other Federal Government agencies that may be able to provide information on MS. They are the:

Food and Drug Administration
Public Affairs Office
Rockville, MD 20857
(301) 827-4573
(888) INFO-FDA (463-6332)
www.fda.gov

The Food and Drug Administration (FDA) is the agency within the Federal Government that regulates drugs and medical devices. FDA staff may be able to provide information on the status and location of certain clinical trials of experimental medications and other therapies. It can also provide information about medications already on the market.

National Rehabilitation Information Center
1010 Wayne Avenue, Suite 800
Silver Spring, Maryland 20910-5633
301-562-2400
800-346-2742
www.naric.com

Funded by the Federal Government's National Institute on Disability and Rehabilitation Research (NIDRR), the National Rehabilitation Information Center (NARIC) functions as an information center and maintains a library with more than 30,000 documents on all aspects of disability and rehabilitation including medical rehabilitation, independent living, physical disabilities, and special education programs. The Center's staff collects and disseminates the results of federally funded research projects. NARIC publishes several brochures, including a newsletter entitled "NARIC Quarterly" that contains information about projects funded by NIDRR and new publications produced by NARIC and other organizations.








References and Sources: Medline, Pubmed, National Institutes of Health.


last update: November 2005


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