Multiple sclerosis

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* This condition is not a rare disease. It is a condition about which the GARD Information Center has received a question.

Multiple sclerosis *
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Multiple sclerosis (MS) is a disorder that affects the central nervous system (CNS), specifically the brain and spinal cord. A fatty tissue called myelin surrounds and protects the nerve fibers of the CNS. Myelin insulates the nerves and allows them to transmit electrical impulses from the brain to other parts of the body. In MS, myelin is lost in multiple areas, and sometimes the nerve fiber itself is damaged or broken. When myelin or the nerve fiber is destroyed or damaged, the nerve’s ability to conduct electrical impulses to and from the brain is disrupted; therefore, nerve signals cannot be transmitted. The disruption of the electrical impulses causes the symptoms associated with MS. ^[1]

More about Multiple sclerosis

References

What is Multiple Sclerosis?. National MS Society Web site. August 3, 2006 Available at: http://www.nationalmssociety.org/site/PageServer?pagename=HOM_ABOUT_what_is_ms. Accessed January 7, 2008.

Questions & Answers (Found 2 Questions)

A list of questions from the public on rare and/or genetic diseases that have been answered by the Genetic and Rare Disease Information Center. Click on each question to find the answer.

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For more information about Multiple sclerosis click on the boxes below:

More Detailed Information	Organizations	Medical Products	Services	Clinical Trials & Research

General \| Management Guidelines \| Press Releases
More Detailed Information (Found 9 resources) Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. General MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information. Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free. The Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information. The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic. The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic. The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Multiple sclerosis. Click on the link to go to OMIM and review these resources. PubMed is a searchable database of medical literature and lists journal articles that discuss Multiple sclerosis. Click on the link to view a sample search on this topic. Management Guidelines GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic. Press Releases On August 13, 2007, The National Institutes of Health (NIH) posted an article titled Genes Linked to Multiple Sclerosis, which discusses 2 genes that influence the risk of developing multiple sclerosis. Click on the name of the article to read more.

General | Management Guidelines | Press Releases

More Detailed Information (Found 9 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates.

General
- MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
- Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free.
- The Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information.
- The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
- The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
- The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Multiple sclerosis. Click on the link to go to OMIM and review these resources.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Multiple sclerosis. Click on the link to view a sample search on this topic.
Management Guidelines
- GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
Press Releases
- On August 13, 2007, The National Institutes of Health (NIH) posted an article titled Genes Linked to Multiple Sclerosis, which discusses 2 genes that influence the risk of developing multiple sclerosis. Click on the name of the article to read more.

Disease-Specific Organizations \| Umbrella Organizations \| Social Networking Websites
Organizations (Found 11 resources) Groups providing a wide range of services, supportive resources, and information. Disease-Specific Organizations Multiple Sclerosis Foundation 6350 North Andrews Avenue Ft. Lauderdale, FL 33309-2130 Toll free: 888-MSFOCUS (673-6287) Telephone: 954-776-6805 Fax: 954-351-0630 E-mail: support@msfocus.org Web site: http://www.msfocus.org National Multiple Sclerosis Society 733 Third Avenue, 6th Floor New York, NY 10017-3288 Toll free: 1-800-344-4867 Telephone: 212-986-3240 Fax: 212-986-7981 E-mail: nat@nmss.org Web site: http://www.nationalmssociety.org Accelerated Cure Project for Multiple Sclerosis 300 Fifth Avenue Waltham, MA 02451 Telephone: 781-487-0008 Fax: 781-487-0009 E-mail: info@acceleratedcure.org Web site: http://www.acceleratedcure.org Multiple Sclerosis Association of America 706 Haddonfield Road Cherry Hill, NJ 08002 Toll free: 800-532-7667 Telephone: 856-488-4500 Fax: 856-661-9797 E-mail: webmaster@msaa.com Web site: www.msassociation.org Umbrella Organizations American Autoimmune Related Diseases Association (AARDA) 22100 Gratiot Avenue Eastpointe East Detroit, MI 48201-2227 Toll-free (In the United States): 800-598-4668 Telephone: 586-776-3900 Fax: 586-776-3903 E-mail: aarda@aarda.org Web site: http://www.aarda.org Genetic Alliance 4301 Connecticut Avenue NW Suite 404 Washington, DC 20008-2369 Telephone: 202-966-5557 Fax: 202-966-8553 E-mail: info@geneticalliance.org Web site: http://www.geneticalliance.org National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Toll-free: 1-800-999-6673 (voicemail only) Telephone: 203-744-0100 TTY: 203-797-9590 Fax: 203-798-2291 E-mail: orphan@rarediseases.org Web site: http://www.rarediseases.org/ Social Networking Websites DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story. Madisons Foundation P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/ The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more. RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.

Disease-Specific Organizations | Umbrella Organizations | Social Networking Websites

Organizations (Found 11 resources)
Groups providing a wide range of services, supportive resources, and information.

Disease-Specific Organizations
- Multiple Sclerosis Foundation
  6350 North Andrews Avenue
  Ft. Lauderdale, FL 33309-2130
  Toll free: 888-MSFOCUS (673-6287)
  Telephone: 954-776-6805
  Fax: 954-351-0630
  E-mail: support@msfocus.org
  Web site: http://www.msfocus.org
- National Multiple Sclerosis Society
  733 Third Avenue, 6th Floor
  New York, NY 10017-3288
  Toll free: 1-800-344-4867
  Telephone: 212-986-3240
  Fax: 212-986-7981
  E-mail: nat@nmss.org
  Web site: http://www.nationalmssociety.org
- Accelerated Cure Project for Multiple Sclerosis
  300 Fifth Avenue
  Waltham, MA 02451
  Telephone: 781-487-0008
  Fax: 781-487-0009
  E-mail: info@acceleratedcure.org
  Web site: http://www.acceleratedcure.org
- Multiple Sclerosis Association of America
  706 Haddonfield Road
  Cherry Hill, NJ 08002
  Toll free: 800-532-7667
  Telephone: 856-488-4500
  Fax: 856-661-9797
  E-mail: webmaster@msaa.com
  Web site: www.msassociation.org
Umbrella Organizations
- American Autoimmune Related Diseases Association (AARDA)
  22100 Gratiot Avenue Eastpointe
  East Detroit, MI 48201-2227
  Toll-free (In the United States): 800-598-4668
  Telephone: 586-776-3900
  Fax: 586-776-3903
  E-mail: aarda@aarda.org
  Web site: http://www.aarda.org
- Genetic Alliance
  4301 Connecticut Avenue NW
  Suite 404
  Washington, DC 20008-2369
  Telephone: 202-966-5557
  Fax: 202-966-8553
  E-mail: info@geneticalliance.org
  Web site: http://www.geneticalliance.org
- National Organization for Rare Disorders (NORD)
  55 Kenosia Avenue
  PO Box 1968
  Danbury, CT 06813-1968
  Toll-free: 1-800-999-6673 (voicemail only)
  Telephone: 203-744-0100
  TTY: 203-797-9590
  Fax: 203-798-2291
  E-mail: orphan@rarediseases.org
  Web site: http://www.rarediseases.org/
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- Madisons Foundation
  P.O. Box 241956
  Los Angeles, CA 90024
  Telephone: 310-264-0826
  Fax: 310-264-4766
  E-mail: getinfo@madisonsfoundation.org
  Web site: http://www.madisonsfoundation.org/
- The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.

Medical Products (Found 5 resources)

U.S. Food and Drug Administration

The Office of Orphan Products Development (OOPD)

The medications listed in the table below have been approved by the Food and Drug Administration (FDA) for treatment of this condition. The FDA Office of Orphan Products Development designates "orphan products" for those that treat rare diseases affecting fewer than 200,000 Americans. The table below may not be an exhaustive list of drugs or products used to treat this condition. There may be other products available that are not considered orphan products. To search all FDA approved drugs, visit Drugs@FDA You can find orphan products used to treat other conditions by searching the Orphan Drug Product Designation database.

Generic Name	Trade Name (Manufacturer Name)	Indication	Resources
Baclofen	Lioresal® (injection) (Medtronic, Inc.)	Management of severe spasticity of spinal cord origin in patients who are unresponsive to oral baclofen therapy or experience intolerable CNS side effects at effective doses.	Drug Information Portal MedlinePlus
Dalfampridine	Ampyra (Acorda Therapeutics)	Treatment to improve walking in patients with multiple sclerosis (MS)	Drug Information Portal
Glatiramer acetate	Copaxone® (Teva Pharmaceuticals USA)	For reduction of the frequency of relapses in patients with relapsing-remitting multiple sclerosis.	Drug Information Portal MedlinePlus
Interferon beta-1a (recombinant human)	Avonex® (Biogen, Inc.)	Treatment of relapsing forms of multiple sclerosis to slow the accumulation of physical disability and decrease the frequency of clinical exacerbations.	Drug Information Portal MedlinePlus
Interferon beta-1b	Betaseron® (Bayer)	In ambulatory patients with relapsing-remitting multiple sclerosis to reduce the frequency of clinical exacerbations.	Drug Information Portal MedlinePlus


Services (Found 2 resources) Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories. Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more. Parent Resources The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.

Services (Found 2 resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories.

- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
Parent Resources
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.


Clinical Trials & Research (Found 4 resources) Resources where you may find research studies and clinical trials. ClinicalTrials.gov lists trials that are studying or have studied Multiple sclerosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies. GeneTests lists laboratories offering research genetic testing for this condition. Research genetic tests may be used to find disease-causing genes, learn how genes work, or aid in the understanding of a genetic disorder. In many cases test results are not shared with the patient or physician. Talk to your health care provider or a genetic professional to learn more about research testing for this condition. NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate. Patient Registry ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

Clinical Trials & Research (Found 4 resources)
Resources where you may find research studies and clinical trials.

- ClinicalTrials.gov lists trials that are studying or have studied Multiple sclerosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- GeneTests lists laboratories offering research genetic testing for this condition. Research genetic tests may be used to find disease-causing genes, learn how genes work, or aid in the understanding of a genetic disorder. In many cases test results are not shared with the patient or physician. Talk to your health care provider or a genetic professional to learn more about research testing for this condition.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
Patient Registry
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.