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International network. Founded 1999. Grassroots group that networks families affected by pediatric/adult Nemaline Myopathy for support and information. Pen pals, literature, phone support, information and referrals available through several Yahoo e-groups targeting age groups and English, Spanish and German speaking families. Nemaline Myopathy conventions organized to meet researchers and other families.
Nemaline Myopathy Support Group
c/o 5 Cairnbank Gardens
Midothian, EH26 9EA UK
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