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Muscular Dystrophy

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

Society for Muscular Dystrophy Information International

(SMDI) * International. Formed to help people share information, to link people with people and organizations concerned with their disorder, to share information to help people help themselves and to create public awareness of neuromuscular disorders/disabilities and the world's organizations and support groups for the disorder. Publishes two quarterly newsletters.
Write:
SMDI
PO Box 7490, Bridgewater
Bridgewater, Nova Scotia, CA B4V 2X6
Voice: 902-685-3961
Fax: 902-685-3962
Website: http://nsnet.org/smdi
Verified: 3/4/2014

FSH Muscular Dystrophy Society

National network. Founded 1991. Provides a grass-roots network of support, information, education and advocacy for individuals with facioscapulohumeral muscular dystrophy, facioscapulohumeral disease, or FSHD (aka Landouzy-Dejerine muscular dystrophy). Offers online and community support group meetings, newsletter, conferences and literature. The Society harnesses the power and insight of a patient-driven model and empowers patients by ensuring them a voice to convey what it is like to live with muscular dystrophy.
Write:
FHS Muscular Dystrophy Society
450 Bedford St.
Lexington, MA 02420
Voice: 781-301-6060
Website: http://www.fshsociety.org To connect with their Yahoo and Facebook groups go to http://www.fshsociety.org/pages/comonline.html
E-Mail: info@fshsociety.org
Verified: 2/18/2014

Parent Project for Muscular Dystrophy Research, Inc.

International network. Founded 1994. Support for parents of children with Duchenne and Becker muscular dystrophy. To improve the treatment, quality of life and long-term outlook for all individuals affected by DMD through research, advocacy, education and compassion. Provides user-friendly website with online forums, scientific and legislative conferences, newsletters, information on newest diagnosis tests, standards of care and research strategies.
Write:
Parent Project for MD Research
401 Hackensack Ave., 9th Floor
Hackensack, NJ 07601
Voice: 1-800-714-5437 or 201-944-9985
Fax: 201-944-9987
Website: http://www.parentprojectmd.org
E-Mail: info@parentprojectmd.org
Verified: 3/12/2014

Muscular Dystrophy Association

National. 200+ chapters. Founded 1950. Provides comprehensive health care, support services,, advocacy and education. Support programs include some 200 MDA-facilitated support groups located throughout the United States, MDA's online care coordination tool myMuscleTeam, scheduled online chat sessions and active community on MDA's Facebook, Twitter and YouTube pages.
Write:
Muscular Dystrophy Association
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
Voice: 1-800-572-1717
Fax: 520-529-5300
Website: http://www.mda.org
E-Mail: mda@mdausa.org
Verified: 3/12/2014

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