1. Sara Sara Germany says:

    i have a friend in london who has also had nemaline myopathy since birth. she is 16 years old and really wants to have this treatment but the doctors are not willing to try until some time in 2013, but if the family hear positive feedback then they would like to start now. Please be in touch if you know more on the subject or if you know who i could contact who has experience in l- tyrosine.
    Many thanks

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