Nemaline Myopathy, Congenital

Self Help Clearinghouse

Nemaline Myopathy Support Group

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.
Write:
Nemaline Myopathy Support Group
c/o 5 Cairnbank Gardens, Penicuik
Midothian, UK EH26 9EA
Website: http://www.nemaline.org
E-mail: davidmcd_@hotmail.com
Verified: 8/15/2012


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