Peer Groups
Other Muscular Dystrophy Organisations
mdausa – the Muscular Dystrophy Association USA website has an extensive site with plenty of further information on any muscular dystrophy conditions as well as research news.
UK muscular dystrophy site contains good general information on the condition.
NZ also has an excellent website dedicated to helping and informing those families with rare disorders – Rare disorders New Zealand
Muscular Dystrophy Foundation Australia
Muscular Dystrophy Support Group - UK & Ireland
Mental Health
Grow - Grow Mental Health provides a safe space online where each person can chat and tell their story in a confidential and friendly setting in the forum of Mental Health Support Groups. Using a world renowned, task based program incorporating a 12 step recovery model, our members meet weekly online, establish friendships, and begin their unique journey towards mental wellbeing.
Becker-Muscular-Dystrophy
Becker Muscular Dystrophy Support Group
Congenital-Muscular-Dystrophy – General
curecmd – is an USA based organisation with lots of information on the different types of CMD.
LMNA
Carmela's Stand Up To Muscular Dystrophy
Duchenne Muscular Dystrophy
Parent Project Muscular Dystrophy
Duchenne Family Support Group - The DFSG is a UK national charity, run by families for families affected by DMD. We have been bringing people together for mutual support, information sharing and social activities since 1987.
Kiwi Kids with DMD - This is a group where we can all chat and share our experiences and ideas together, and support each other, friends, families and our Kiwi Kids with DMD. Anybody is welcome to join.
Duchenne Muscular Dystrophy family support group
Emery Dreifuss Muscular Dystrophy
Facioscapulohumeral Muscular Dystrophy
MyFSHD - If you found us because you or a loved one has been clinically and/or genetically diagnosed with FSHD, or you suspect FSHD, or perhaps you just have lots of questions and need some answers, we are here to help!
FSHD Society Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone
Information for Patients and Families
Limb-girdle types of muscular dystrophy (LGMD) – General
Limb Girdle Muscular Dystrophy Beyond Labels and Limitations.
National Limb Girdle Muscular Dystrophy
LGMD-2A (also known as Calpainopathy)
Limb Girdle Muscular Dystrophy 2A (CALPAINOPATHY) | Facebook
LGMD-2J
LGMD2J - Limb Girdle Muscular Dystrophy 2J
Oculopharyngeal Muscular Dystrophy (OPMD)
OPMD Oculopharyngeal Muscular Dystrophy
OPMD Oculopharyngeal Muscular Dystrophy Resources
Congenital Myotonic Dystrophy
Congenital Myotonic Dystrophy Network
Non-Dystrophic Myotonia (NDM)
Non-Dystrophic Myotonia (NDM) Education and Support
Myotonic dystrophy
The Myotonic Dystrophy Foundation
Myotonic Dystrophy Support and Information
Myotonic Dystrophy Surviving and Thriving
Central Core Myopathy
Central Core Disease & Minicore: a place for support, learning & friends
Congenital Fibre Type Disproportion Myopathy
Congenital Fiber-Type Disproportion
Minicore (Multicore) Myopathy
The Minicore Project Support Group
Myotubular Centronuclear Myopathy
MTM/CNM (Myotubular/Centronuclear Myopathy) Family Support & Discussion
Nemaline Rod Myopathies
Nemaline and Congenital Myopathy Community
Mitochondrial Myopathies
Understanding Mitochondrial Nutrients
McArdle Disease
Metabolic Conditions
Metabolic Syndrome Support Group
Pompe’s Disease
Myositis
The Myositis “Ramblers” – a keep in touch group for all with a connection to myositis. This is a closed group.
Myositis Care Partners, Family & Friends Support
Polymyositis Dermatomyositis
Dermatomyositis and Polymyositis Patients – for DM and PM patients ONLY. Message an admin explaining that you have PM or DM and they will add you – closed group (MDA Member Pip McLean is an admin for this group).
Juvenile Dermatomyositis (JDM)
Cure JDM – specifically for Juvenile Dermatomyositis (JDM)
JDM Warriors – for all JDMer’s, their families and their supporters – a safe place for kids to post (run by a man called Brandt Stebbins who has JDM). This is a closed group.
Juvenile Dermatomyositis (JDM) Parents and Caregivers – This group is only for parents and those who actively care for a JDM child.
Inclusion Body Myositis (IBM)
Inclusion Body Myositis Support and Understanding – this group is for patients. You will be added and then asked what type of myositis you have. This is a closed group.
Inclusion Body Myositis Caregivers – this is a closed group for primary caregivers only.
Spinal Muscular Atrophies
SMA Ireland - Spinal Muscular Atrophy Ireland Foundation CLG – SMA Ireland
Spinal Muscular Atrophy Support Group
Spinal Muscular Atrophy (SMA) Physical Therapy Group
Charcot-Marie-Tooth (also known as Peroneal muscular atrophy)
CMT Association’s (USA), Help for Parents, which includes a webinar, “Parenting with Pleasure: One Mother’s Perspective on Parenting a Child with CMT”.
Charcot Marie Tooth Support USA - My name is Diane Gracely. I was born with Charcot Marie Tooth disease. I’m 58 years old and live in Florida. I started this support group to meet and support others who have CMT.
Living with Charcot Marie Tooth - we are a self help group focusing on day to day living with CMT.
If you are between the ages of 13 and 21 and would like to connect with other kids who have CMT, join our CMTA Youth Group on Facebook. The Youth Group is moderated and maintained by CMTA staff members.
Charcot Marie Tooth CMT Discussion Group
CMTUS - Charcot-Marie-Tooth Disease - A place for US!
Podcast
CMT 4 me podcast
Myasthenia Gravis
Support group for people affected by Myasthenia Gravis
Members meet regularly on Zoom the group is run by MDUK
Please email Calley Clay on c.clay@musculardystrophyuk.org to sign up to attend future meetings.
Oculopharyngeal muscular dystrophy (OPMD)
Members meet annually, usually on Zoom the group is run by MDUK
Oculopharyngeal Muscular Dystrophy Support Group | Muscular Dystrophy UK
Please email Calley Clay on c.clay@musculardystrophyuk.org to sign up to attend future meetings.
Ataxia Foundation
The National Ataxia Foundation – USA
Awaaz Support Group
The Neuromuscular Awaaz Support Group connects members of the South Asian community, who are affected by muscle-wasting conditions
The Awaaz group meets regularly and have a facebook page.
Contact information: info@musculardystrophyuk.org
If your condition is not listed you can join another group, or we can help you to start your own. Also, if you know of a group you would like added to this page please contact us