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I have included several links to further--and different types of--information. Some resources are more detailed than others, and some may have more or less useful information depending on your needs. However, as I've always felt, the more information the better.
Note: Links will open in a new browser window.
Bulletin Boards and E-mail Groups · Personal/Informational Sites
The links below are provided for informational purposes only. All views and information on the sites are the responsibility of the site owners.
Medical Information Sites:
Congenital MyopathiesElectromyography (EMG) and Nerve Conduction Velocity (NCV)
European Neuromuscular Centre
Malignant Hyperthermia
Muscle Diseases
National Organization for Rare Diseases
Neuromuscular Disease Center
Pediatric Database
Organizational Sites:
Malignant Hyperthermia Association of the United States HomepageMuscular Dystrophy Association--Australia
Muscular Dystrophy Association--Canada
Muscular Dystrophy Association--United Kingdom
Muscular Dystrophy Association--United States
Articles:
"Coping with Central Core Disease""Simply Stated... The Creatine Kinase Test"
Bulletin Boards and E-mail Groups:
Benign Congenital Hypotonia E-mail ListHypotonia Bulletin Board at Parents Place
Myopathy E-mail List
Neurology WebForums at Massachusetts General Hospital
Personal/Informational Sites:
Being Ben's Momma--Includes information on a number of neuromuscular disorders--as well as personal information from the mother of a child with a probable neuromuscular disorder.The Benign Congenital Hypotonia Site--Includes information on disorders characterized by low muscle tone. The site owner has nemaline myopathy.
A Touch of Faith--Includes information on multicore and other myopathies. The site owner has multicore.
Congenital Myopathy --Includes web sources on myopathies. The site owner is another mother of a son tentatively diagnosed with a congenital myopathy.
Nemaline Myopathy--A comprehensive site about nemaline myopathy.
UK Congenital Hypotonia Website--Contains information about low muscle tone. The site is not specific to the UK, although the links and support information may be more applicable to UK residents.