Online Resources & Support Groups

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

General Resources

Cure CMD Facebook Page
Cure CMD Support Group

Collagen VI CMD (Ullrich CMD and Bethlem Myopathy)

Read about Collagen VI CMD
Ullrich CMD (Intermediate to Severe Collagen VI) Facebook Support Group
Bethlem Myopathy (Mild to Intermediate Collagen VI) Facebook Support group
Bethlem Myopathy (Mild to Intermediate Collagen VI) Facebook Page

Merosin Deficient (LAMA2)

Read about LAMA2 CMD
Facebook: Positive Mums for Merosin Negative Kids
Merosin Deficient CMD Facebook Support Group

Dystroglycanopathy CMD

Read about the Dystroglycanopathies
LGMD2I Fund
The Samantha J Brazzo Foundation – LGMD2I
Dystroglycanopathy Yahoo! Support Group
Dystroglycanopathy with Cognitive Impairment Facebook Support Group
LGMD2i Facebook Support Group
Parents and Family of LGMD2I
Walker Warburg Facebook Support Group
Walker Warburg Yahoo! Support Group
Lissencephaly Yahoo! Support Group

L-CMD (LMNA) & Emery-Dreifuss (EMD)

Read about LMNA CMD
LMNA Facebook Support Group
Emery-Dreifuss Facebook Support Group

SEPN1 RM/Rigid Spine Muscular Dystrophy

Read about SEPN1
SEPN1 Facebook Support Group
Yahoo! Support Group for Families with SEPN1/Rigid Spine MD

RYR1 CMD/Central Core Disease

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

Undiagnosed CMD, Including Merosin Positive

Read about Merosin Positive CMD
Cure CMD Support Group

Centronuclear and Myotubular Myopathy

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

Titin Myopathy

Information about Titin Myopathy
Titin Related Centronuclear Myopathy Facebook Page

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
Facebook: Nemaline Myopathy Community: We’re All In This Together

Congenital Myasthenic Syndrome

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

  • 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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