Question 1

General Resources

Accepted Answer

• Cure CMD on Facebook: Get the latest news and information about all things CMD! (https://www.facebook.com/CureCMD)
 • Cure CMD on Twitter (https://twitter.com/i/flow/login?redirect_after_login=%2FCureCMD)
 • Cure CMD on Instagram (https://www.instagram.com/curecmd/)
 • Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • Breathe with MD Support Group (https://www.facebook.com/groups/BreathewithMDSupportGroup)
 • Teens & Young Adults with Disabilities (https://www.facebook.com/groups/644205712411542/)
 • We Are More - WAM!: Dedicated to Changing the Way Society Views Young Adults with Disabilities (https://www.facebook.com/thewaminitiative)
 • College and Beyond: Life with Disabilities (https://www.facebook.com/groups/1794978214121839/)
 • Muscular Dystrophy Spousal Support Group (https://www.facebook.com/groups/1169732586435876/)
 • Myopathy Support Group (https://www.facebook.com/groups/128977355367)
 • Congenital Myopathy: We're All In This Together (https://www.facebook.com/groups/congenitalmyopathy)

Question 2

Collagen 6 - Ullrich CMD through Bethlem Myopathy

Accepted Answer

• Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • Ullrich CMD (Intermediate to Severe Collagen VI) Support Group (https://www.facebook.com/groups/col6cmd)
 • Bethlem Myopathy (Mild to Intermediate Collagen VI) Support group (https://www.facebook.com/groups/285978178093465/)
 • Bethlem Myopathy (Mild to Intermediate Collagen VI) Public Group (https://www.facebook.com/groups/60480497023/)
 • COL-VI German Wiki (https://col6.miraheze.org/wiki/Hauptseite)

Question 3

Collagen 12

Accepted Answer

• Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • Collagen XII Support Group (https://www.facebook.com/groups/collagenxii)
 • COL12A1 Related Myopathy (https://www.facebook.com/groups/col12a1)

Question 4

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

Accepted Answer

• Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • Dystroglycanopathy with Cognitive Impairment (https://www.facebook.com/groups/curecmdaDG)
 • LGMD2i Support Group (https://www.facebook.com/groups/LGMD2I)
 • Parents and Family of LGMD2I (https://www.facebook.com/groups/1419906754916266)
 • WWS Support Group (https://www.facebook.com/groups/109842099061595)
 • MEB Support Group (https://www.facebook.com/groups/205268093263041)
 • LGMD2i Fund (https://www.lgmd2ifund.org/)
 • Cure LGMD2i Foundation (https://curelgmd2i.com/)
 • Congenital FKRP (https://www.facebook.com/groups/3126699760881401)
 • POMT1 - Congenital Muscular Dystrophy Connect (https://www.facebook.com/groups/752525979340178/)

Question 5

LAMA2 - Merosin Deficient/Merosin Negative

Accepted Answer

• Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • LAMA2-Merosin Deficient-MDC1A (Full Deficiency) (https://www.facebook.com/groups/lama2cmd/)
 • LAMA2-Merosin Deficient-MDC1A (Partial Deficiency) (https://www.facebook.com/groups/lama2cmdpartialdeficiency/)

Question 6

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

Accepted Answer

• Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • LMNA-CMD Support Group(https://www.facebook.com/groups/lmnacmd)
 • Laminopathies Support Group (mutations in the LMNA Gene)(https://www.facebook.com/groups/128043434571511/)
 • Emery-Dreifuss Support Group(https://www.facebook.com/groups/EmeryDreifuss/)
 • La Fundación Andrés Marcio (Andres Marcio Foundation, Spain)(http://www.fundacionandresmarcio.com/)

Question 7

SELENON (SEPN1) - Rigid Spine Muscular Dystrophy/RSMD

Accepted Answer

• Cure CMD Support Group for All Subtypes (https://www.facebook.com/groups/CureCMDSupport/)
 • SELENON Support Group (https://www.facebook.com/groups/SEPN1RSMD)
 • My Dystrophia: My journey with rigid-spine congenital muscular dystrophy (SEPN1) (https://www.mydystrophia.com/)
 • Our SEPN1 Life: A mother's blog about her two sons with SEPN1 (https://oursepn1life.wordpress.com/)

Question 8

Titin Related Disorders

Accepted Answer

• Titin Related Muscle and Heart Disorders Discussion Group (https://www.facebook.com/groups/1471318463176054)
 • Titin Myopathy: All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies (https://titinmyopathy.com/)

Question 9

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

Accepted Answer

• RYR1 Foundation on Facebook (https://www.facebook.com/ryr1foundation)
 • RYR1 Related Myopathy Community (https://www.facebook.com/ryr1myopathy)
 • The Minicore Project Support Group (https://www.facebook.com/groups/theminicoreproject/)
 • Central Core Disease & Minicore: a Place for Support, Learning & Friends (https://www.facebook.com/groups/243087794204/)
 • RYR1 Foundation (https://ryr1.org/)

Question 10

Centronuclear and Myotubular Myopathy

Accepted Answer

• MTM/CNM Family Support & Discussion Group (https://www.facebook.com/groups/MtmCnmFamilySupportandDiscussion)
 • Lets Keep In Touch Connecting Families Affected By Myotubular Myopathy & CNM (https://www.facebook.com/groups/59692154015/?ref=group_browse_new)
 • Centronuclear Myopathy/CNM (https://www.facebook.com/groups/777453492334946/)
 • Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy (https://www.facebook.com/TheJoshuaCause/)
 • Miopatía Miotubular (MTM) – Miopatia centronuclear (CNM) Facebook  (Espanol) (https://www.facebook.com/groups/940289522705370/)
 • Joshua Frase Foundation (MTM/CNM) (https://www.joshuafrase.org/)
 • MTM-CNM Family Connection (http://www.mtm-cnm.org/)
 • Where There’s A Will There’s A Cure Foundation for Myotubular Myopathy (https://www.will-cure.org/)
 • The Information Point for Centronuclear and Myotubular Myopathy (https://centronuclear.org.uk/)
 • The Myotubular Trust​ (https://myotubulartrust.org/)

Question 11

Nemaline Myopathy

Accepted Answer

• Partners: AFBS for Nemaline Myopathy (https://www.facebook.com/search/top/?q=Partners%3A%20AFBS%20for%20Nemaline%20Myopathy)
 • Congenital Nemaline Myopathy Community: We're All In This Together (https://www.facebook.com/groups/1206757622673721/)
 • A Foundation Building Strength for Nemaline Myopathy on Facebook (https://www.facebook.com/BuildingStrength/)
 • A Foundation Building Strength for Nemaline Myopathy (https://buildingstrength.org/)

Question 12

Congenital Myasthenic Syndrome

Accepted Answer

• Congenital Myasthenic Syndrome Support Group (https://www.facebook.com/groups/24708253720/?fref=ts)
 • Congenital Myasthenic Facebook Community Page (https://www.facebook.com/CongenitalMyasthenicSyndrome?fref=ts)
 • Myasthenic Kids (https://myasthenickids.org/)

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