Cure CMD

A study seeks people suspected of having myotubular myopathy who have not yet had their MTM1 gene mutation confirmed by a clinically certified lab

posted on April 19, 2013 - 5:00am
Update (May 2, 2013): The names of the collaborators on this study were updated.

Disease registry seeks input from people with congenital muscular dystrophies, congenital myasthenic syndromes or other congenital muscle disorders, including those with no clear diagnosis

posted on March 12, 2013 - 12:41pm
An international patient registry (database) is gathering information about children and adults with any form of congenital muscular dystrophy (CMD), a congenital myasthenic syndrome or a congenital myopathy (congenital muscle disease), with the goals of promoting research and improving care in these disorders.