General Resources

• Cure CMD on Facebook: Get the latest news and infromation about all things CMD!

• Cure CMD on Twitter

• Cure CMD on Instagram

• Cure CMD Support Group for All Subtypes

• Breathe with MD Support Group

• Teens & Young Adults with Disabilities

• We Are More - WAM!: Dedicated to Changing the Way Society Views Young Adults with Disabilities

• College and Beyond: Life with Disabilities

• Muscular Dystrophy Spousal Support Group

• Myopathy Support Group

• Congenital Myopathy: We're All In This Together

 

Collagen VI

Full Spectrum of Collagen VI/Disorders from Ullrich CMD through Bethlem Myopathy

• Ullrich CMD (Intermediate to Severe Collagen VI) Support Group

• Bethlem Myopathy (Mild to Intermediate Collagen VI) Support group

• Bethlem Myopathy (Mild to Intermediate Collagen VI) Public Group

• Collagen VI Related Pathologies International Group
   

Collagen XII​

• Collagen XII Support Group

• COL12A1 Related Myopathy

Dystroglycanopathies

aDG-MD, Dystroglycanopathy, Walker-Warburg, Muscle-Eye-Brain, Fukuyama, LGMD2I, LGMD2K, LGMD2M, LGMD2N, LGMD2O

• Dystroglycanopathy with Cognitive Impairment

• LGMD2i Support Group

• Parents and Family of LGMD2I

• WWS Support Group

• MEB Support Group

• LGMD2i Fund

• Cure LGMD2i Foundation

• Congenital FKRP

• POMT 1

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LAMA2

Merosin Deficient/Merosin Negative 

• LAMA2-Merosin Deficient-MDC1A (Full Deficiency)

• LAMA2-Merosin Deficient-MDC1A (Partial Deficiency)

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Laminopathies

LMNA-CMD (L-CMD, Lamin A/C), LGMD1B & EDMD​

• LMNA-CMD Support Group

• Laminopathies Support Group (mutations in the LMNA Gene)

• Emery-Dreifuss Support Group

• La Fundación Andrés Marcio (Andres Marcio Foundation, Spain)

 

SEPN1

Rigid Spine Muscular Dystrophy/RSMD

• SEPN1/RSMD Support Group

• My Dystrophia: My journey with rigid-spine congenital muscular dystrophy (SEPN1)

• Our SEPN1 Life: A mother's blog about her two sons with SEPN1

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Titin Related Disorders

• Titin Related Muscle and Heart Disorders on Facebook

• Titin Related Muscle and Heart Disorders Discussion Group

• Titin Myopathy: All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies

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RYR1

Central Core, Multiminicore and Centronuclear Myopathy, Malignant Hyperthermia related to RYR1 mutations

• RYR1 Foundation on Facebook

• RYR1 Related Myopathy Community

• The Minicore Project Support Group

• Central Core Disease & Minicore: a Place for Support, Learning & Friends

• RYR1 Foundation

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Centronuclear and Myotubular Myopathy

• MTM/CNM Family Support & Discussion Group

• Lets Keep In Touch Connecting Familes Affected By Myotubular Myopathy & CNM

• Centronuclear Myopathy/CNM

• Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy

• Miopatía Miotubular (MTM) – Miopatia centronuclear (CNM) Facebook  (Espanol)

• Joshua Frase Foundation (MTM/CNM)

• MTM-CNM Family Connection

• Where There’s A Will There’s A Cure Foundation for Myotubular Myopathy

• The Information Point for Centronuclear and Myotubular Myopathy

• The Myotubular Trust​

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Nemaline Myopathy​

• Partners: AFBS for Nemaline Myopathy

• Congenital Nemaline Myopathy Community: We're All In This Together

• A Foundation Building Strength for Nemaline Myopathy on Facebook

• A Foundation Building Strength for Nemaline Myopathy

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Congenital Myasthenic Syndrome

• Congenital Myasthenic Syndrome Support Group

• Congenital Myasthenic Facebook Community Page

• Myasthenic Kids

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If you see a group or page missing from this list, please email us at info@curecmd.org

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