CMD Support Groups and Advocacy Websites

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Newly Diagnosed

Support Groups, Pages, and Websites by Subtype

General Resources
Collagen 6
Collagen 12
Dystroglycanopathies

LAMA2 (Merosin)
LMNA (Laminopathies)
SEPN1
Titin Related Disorders

RYR1
Centronuclear/Myotubular Myopathy
Nemaline Myopathy
Congenital Myasthenic Syndrome

General Resource

Col6

LAMA2

aDG

LMNA

SELENON

RYR1

TTN

Col12

Cure CMD on Facebook: Get the latest news and information 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

Cure CMD Support Group for All Subtypes
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
COL-VI German Wiki

Cure CMD Support Group for All Subtypes
Collagen XII Support Group
COL12A1 Related Myopathy

Cure CMD Support Group for All Subtypes
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
POMT1 - Congenital Muscular Dystrophy Connect

Cure CMD Support Group for All Subtypes
LAMA2-Merosin Deficient-MDC1A (Full Deficiency)
LAMA2-Merosin Deficient-MDC1A (Partial Deficiency)

Cure CMD Support Group for All Subtypes
LMNA-CMD Support Group
Laminopathies Support Group (mutations in the LMNA Gene)
Emery-Dreifuss Support Group
La Fundación Andrés Marcio (Andres Marcio Foundation, Spain)

Cure CMD Support Group for All Subtypes
SELENON 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

Titin Related Muscle and Heart Disorders Discussion Group
Titin Myopathy: All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies

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

MTM/CNM Family Support & Discussion Group
Lets Keep In Touch Connecting Families 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

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

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

CN&MM

NM

CMS

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