Websites of Interest to Researchers/Clinicians

There are many websites with information relating to CMT. The content of these sites ranges from general information about diagnosis and treatment to highly scientifc data regarding genetics.

The listing below is by no means exhaustive. It is merely intended to provide clinicians and researchers with quick and easy access to some of the most useful sites.

Please click on any of the topics below to view a list of these sites.

• CMT Medical Information, Diagnosis, and Treatment
• Genetics and CMT
• Medical Literature and Resource Locators
• Neuropathic and Chronic Pain

• Charcot-Marie-Tooth Program
  John P. Murtha Neuroscience and Pain Institute
  1450 Scalp Ave, Suite 2100
  Johnstown, PA 15904-0000
  Toll Free: 877-576-5700
  Email: bduryea@conemaugh.org
  Information about treatment and management of CMT

• CMT Clinic at Wayne State University
  (Clinic Address)
  University Health Center 8B
  4201 St. Antoine
  (Mail Address)
  421 E Canfield Ave
  Ellman Bldg, Rm 3301
  Detroit, MI 48201-0000
  Tel: 313-577-1689
  Fax: 313-577-7552
  Info about CMT and the CMT North American Database

• Jack Miller Center for Peripheral Neuropathy
  The University of Chicago
  Department of Neurology
  5841 S Maryland Ave, MC2030
  Chicago, IL 60637-0000
  Email: information-millercenter@neurology.bsd.uchicago.edu
  Learn about peripheral neuropathy, neurological exams, CMT/HNPP and more

• Mayo Clinic
  Basic info about CMT

• National Institute of Arthritis and Musculoskeletal and Skin Diseases
  National Institutes of Health
  1 AMS Circle
  Bethesda, MD 20892–3675
  Tel: 301–495–4484
  Toll Free: 877-226–4267
  Fax: 301–718–6366
  Email: NIAMSInfo@mail.nih.gov
  Questions and answers about scoliosis in children and adolescents

• NeuroCAST
  Athena Diagnostics, Inc.
  Four Biotech Park
  377 Plantation St
  Worcester, MA 01605-0000
  Toll Free: 800-394-4493
  Fax: 508-753-5601
  Email: info@athenadiagnostics.com
  Information on diagnosing peripheral neuropathy.

• Muscular Dystrophy Association
  National Headquarters
  3300 E Sunrise Dr
  Tucson, AZ 85718-0000
  Toll Free: 800-572-1717
  Email: mda@mdausa.org
  CMT is one of 40 neuromuscular diseases covered by the MDA's comprehensive service program, which includes medical examinations and assistance with purchase of wheelchairs and leg braces.

• Muscular Dystrophy Canada
  2345 Yonge St, Suite 900
  Toronto, ON M4P 2E5
  Toll Free: 866-687-2538
  Fax: 416-488-7523
  Email: info@muscle.ca
  CMT is also covered by Muscular Dystrophy Canada

• Hereditary Neuropathy w/Pressure Palsies (HNPP)
  Email: mphorton@qwest.net
  Info and resources related to HNPP

• Peripheral Nerve Society
  Ms. Amber Millen, Executive Secretary
  Department of Anesthesiology (Mail Code 0629)
  University of California, San Diego
  Medical Teaching Facility, Room 445
  Gilman Dr
  La Jolla, CA 92093-0629
  Tel: 858-534-3865
  Fax: 858-534-1445
  Email: amillen@ucsd.edu
  An international society of scientists and physicians devoted to understanding, diagnosing, and treating peripheral nerve diseases

• Shriners Hospitals for Children
  Toll Free: 800-237-5055
  Shriners Hospitals for Children is a network of pediatric specialty hospitals where children under 18 receive excellent medical care free of charge

• American Society of Gene Therapy
  555 E Wells St, Suite 1100
  Milwaukee, WI 53202-0000
  Tel: 414-278-1341
  Fax: 414-276-3349
  Email: info@asgt.org
  ASGT is a professional, non-profit medical and scientific organization dedicated to the understanding of gene therapy

• Athena Diagnostics
  Four Biotech Park
  377 Plantation St
  Worcester, MA 01605-0000
  Tel: 508-756-2886
  Toll Free: 800-394-4493
  Fax: 508-753-5601
  Email: info@athenadiagnostics.com
  Athena is a private company that performs the majority of genetic testing for CMT

• Combined Health Information Database
  7830 Old Georgetown Rd
  Bethesda, MD 20814-0000
  Email: chid@aerie.com
  The Medical Genetics and Rare Disorders database has contact information for organizations that focus on genetic testing and gene therapy, inherited disorders, and rare disorders and information on available publications

• Frequency of Inherited Disorders Database
  Enter "Charcot Marie Tooth Disease"

• The Genetics and Rare Disease Information Center
  PO Box 8126
  Gaithersburg, MD 20898-8126
  Tel: 301-519-3194
  Toll Free: 888-205-2311
  Fax: 240-632-9164
  Email: gardinfo@nih.gov
  The Genetic and Rare Diseases Information Center employs experienced information specialists to answer questions from the general public, including patients and their families, health care professionals, and biomedical researchers.

• Gene Tests
  9725 Third Avenue NE
  Suite 602
  Seattle, WA 98115
  Tel: 206-616-4033
  Fax: 206-221-4679
  Email: genetests@gentests.org
  Provides current, authoritative information on genetic testing and its use in diagnosis, management, and genetic counseling; not a clinical genetic service

• Genetics Home Reference
  Genetics Home Reference is the National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes responsible for those conditions

• The Jackson Laboratory
  600 Main Street
  Bar Harbor, Maine 04609 USA
  Tel: 207-288-6000
  Mouse models and genomics

• National Coalition for Health Professional Education in Genetics
  2360 W Joppa Rd, Suite 320
  Lutherville, MD 21093-0000
  Tel: 410-583-0600
  Fax: 410-583-0520
  Email: geneticsinfo@earthlink.net
  NCHPEG is committed to a national effort to promote health professional education and access to information about advances in human genetics

• National Human Genome Research Institute
  National Institutes of Health
  Building 31, Room 4B09
  31 Center Dr, MSC 2152
  9000 Rockville Pike
  Bethesda, MD 20892-2152
  This site provides users with information to help the public better understand genetics, genomics and diagnosed genetic disorders, but does not provide personalized medical advice to individuals about their condition or treatment

• Washington University Neuromuscular Disease Center
  Hereditary Motor Sensory Neuropathies
  Neuromuscular Division
  Box 8111-Neurology
  660 S Euclid Ave
  St Louis, MO 63110-0000
  Tel: 314-362-6981
  Fax: 314-362-3752
  CMT/HSMN gene loci, clinical features, electrophysiology, etc.

• American Occupational Therapy Association, Inc.
  4720 Montgomery Lane
  PO Box 31220
  Bethesda, MD 20824-1220
  Tel: 301-652-2682
  Toll Free: 800-377-8555
  Fax: 301-652-7711
  About OT and finding an occupational therapist; cannot answer treatment questions about specific cases

• Ask COSMO, the NLM Virtual Representative
  COSMO answers questions about the National Library of Medicine's products and services by pointing to sources of information

• BioMechanics Magazine
  Tel: 952-844-0512
  Fax: 952-844-0017
  Email: biosubs@masub.com
  Browse or search archives for articles of interest; also see Braces Source List 2005 in February 2005 and Foot Orthosis Source List 2005 in July 2005

• ClinicalTrials.gov
  Up-to-date information for locating federally and privately supported clinical trials

• NLM Gateway
  U.S. National Library of Medicine
  8600 Rockville Pike
  Bethesda, MD
  The NLM Gateway allows users to search in multiple retrieval systems at the U.S. National Library of Medicine

• Locator Plus
  U.S. National Library of Medicine
  8600 Rockville Pike
  Bethesda, MD
  Search for book, journal and audiovisual titles in the NLM collections

• Medscape
  Search Medline for "Charcot-Marie-Tooth" and view abstracts to over 200 articles

• MedlinePlus
  U.S. National Library of Medicine
  8600 Rockville Pike
  Bethesda, MD 20894-0000
  Email: custserv@nlm.nih.gov
  Consumer portal into health information at NLM/NIH

• National Center for Biotechnology Information
  U.S. National Library of Medicine
  Building 38A
  Bethesda, MD 20894-0000
  Tel: 301-496-2475
  Fax: 301-480-9241
  Email: info@ncbi.nlm.nih.gov
  Search across databases on "Charcot-Marie-Tooth" and get results for hundreds of abstracts and articles; also info on human genome

• National Institute of Neurological Disorders and Stroke
  NIH Neurological Institute
  PO Box 5801
  Bethesda, MD 20824-0000
  Tel: 301-496-5751
  Toll Free: 800-352-9424
  NINDS supports and conducts research, both basic and clinical, on the normal and diseased nervous system, fosters the training of investigators in the basic and clinical neurosciences, and seeks better understanding, diagnosis, treatment, and prevention of neurological disorders.

• National Library of Medicine
  8600 Rockville Pike
  Bethesda, MD 20894-0000
  Tel: 301-594-5983
  Toll Free: 888-346-3656
  Fax: 301-402-1384
  Email: custserv@nlm.nih.gov
  The NLM, on the campus of the National Institutes of Health in Bethesda, Maryland, collects materials and provides information and research services in all areas of biomedicine and health care

• Online Mendalian Inheritance in Man
  Email: info@ncbi.nlm.nih.gov
  Search OMIM for "Charcot-Marie-Tooth" and view over 120 articles

• PubMed Central
  National Institutes of Health
  9000 Rockville Pike
  Bethesda, MD 20892-0000
  Email: pubmedcentral@nih.gov
  Free access to full-text articles

• Stem Cell Information
  National Institutes of Health
  9000 Rockville Pike
  Bethesda, MD 20892-0000
  Email: stemcell@mail.nih.gov
  Information about stem cell research

• American Chronic Pain Association
  PO Box 850
  Rocklin, CA 95677-0000
  Toll Free: 800-533-3231
  Fax: 916-632-3208
  Email: ACPA@pacbell.net
  Info and resources for consumers and professionals

• HealingChronicPain.org
  Beth Israel Medical Center
  First Ave at 16th St
  New York, NY 10013-0000
  Toll Free: 877-620-9999
  Fax: 212-844-1503
  Email: stoppain@chpnet.org
  Information about an integrative approach to treating chronic pain

• The National Pain Foundation
  3511 S Clarkson St
  Englewood, CO 80113-0000
  Email: aardrup@nationalpainfoundation.org
  An online education and support community for persons in pain, their families and physicians

• Pain.Com
  Email: editor@dannemiller.com
  Info and resources for consumers and professionals

• Partners Against Pain
  One Stamford Forum
  Stamford, CT 06901-3431
  Toll Free: 888-827-0615
  Email: partnersagainstpain@pharma.com
  Info and resources for consumers and professionals

• StopPain.org
  Beth Israel Medical Center
  Department of Pain Medicine and Palliative Care
  First Ave at 16th St
  New York, NY 10013-0000
  Tel: 212-844-1462
  Fax: 212-844-1503
  Email: mayday@bethisraelny.org
  Register to view slide presentations on pain