Online Resources & Support Groups

If you would like to add a support group or other related website to this list, please contact us at

Collagen VI CMD (Ullrich CMD and Bethlem Myopathy)

Read more about Collagen VI CMD
Ullrich Yahoo! Support Group
Bethlem Myopathy Facebook Page

Merosin Deficient CMD

Read more about Merosin Deficient CMD
Facebook: Positive Mums for Merosin Negative Kids

Dystroglycanopathy CMD

Read more about the Dystroglycanopathies
Dystroglycanopathy Yahoo! Support Group
Walker Warburg Yahoo! Support Group
Lissencephaly Yahoo! Support Group
Fight For Keira – Walker Warburg Syndrome
The Samantha J Brazzo Foundation – LGMD2I

SEPN1 RM/Rigid Spine Muscular Dystrophy

Read about SEPN1
Yahoo! Support Group for Families with SEPN1/Rigid Spine MD
Rigid Spine Muscular Dystrophy Blog


Yahoo! support group for L-CMD

RYR1 CMD/Central Core Disease

Yahoo! Support Group for Families with Central Core Disease (RYR1)

Undiagnosed CMD, Including Merosin Positive

Read more about Merosin Positive CMD
Yahoo! Support group for Merosin Positive

Centronuclear and Myotubular Myopathy

The Information Point for Centronuclear and Myotubular Myopathy
Joshua Frase Foundation (MTM/CNM)
MTM/CNM Family Support & Discussion Facebook Page
Joshua Frase Foundation Facebook Page
Yahoo! Support group for Myotubular Myopathy
The Myotubular Trust
Where There’s A Will There’s A Cure Foundation for Myotubular Myopathy

Nemaline Myopathy

A Foundation Building Strength for Nemaline Myopathy
Facebook: Nemaline Myopathy Awareness, Education, and Research Updates
Facebook:  A Foundation Building Strength
Facebook: Nemaline Myopathy Support Group (Private)

Congenital Myasthenic Syndrome

Congenital Myasthenic Syndrome Facebook Group
Congenital Myasthenic Facebook Community Page
Myasthenic Kids

General Resources

Cure CMD Facebook Page
Cure CMD Support Group
Talk MD Forums for discussion of all kinds about Muscular Dystrophy
Patients Like Me
All inclusive Yahoo! group for CMD started in 1999, 175 members
Yahoo! group for Adults with CMD and other Rare Diseases

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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