Nemaline myopathy is a disorder that primarily affects skeletal muscles, which are muscles that the body uses for movement. People with nemaline myopathy have muscle weakness (myopathy) throughout the body, but it is typically most severe in the muscles of the face, neck, and limbs. This weakness can worsen over time. Nemaline myopathy has an estimated incidence of 1 in 50,000 individuals. For more information about Nemaline Myopathy please click here.
http://www.nemaline.org/ - this page is regularly updated and has links to others and information
http://www.buildingstrength.org/ - this page is dedicated to a cure and also has a care guide for families