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Support Groups

We know that talking to people with similar experiences is powerful. Our support groups are safe and welcoming places to talk to others affected by muscle wasting and weakening conditions, share experiences and meet people who understand what you’re going through. Whether you’re looking to find support in-person, or online, we’ve got a support group for you.

WhatsApp Groups

Join one of our WhatsApp groups and meet new people, share experiences, and get advice in a friendly and supportive environment. 

The groups are monitored by our staff and volunteers who are also available to provide support, information, and advice. To join our WhatsApp groups and help keep them a welcoming space for all, read and follow the WhatsApp groups joining criteria, rules and safeguarding.

Young person's WhatsApp group 14-17 years old

If youre a young person living with a muscle wasting condition in the UK and aged between 14-17 , our WhatsApp support group is here for you.

Young person's WhatsApp group 18-30 years old

If youre a young person living with a muscle wasting condition in the UK and aged between 18-30 , our WhatsApp support group is here for you.

Age 30-65 year's WhatsApp group

Our WhatsApp group for adults is open to anyone aged 30-65 and living with a muscle wasting or weakening condition in the UK. 

65+ WhatsApp group

Our WhatsApp group for adults is open to anyone aged 65+ and living with a muscle wasting or weakening condition in the UK. 

Women's health WhatsApp group 30+

Open to women aged 30+ living with a muscle wasting or weakening condition in the UK, to share experiences, get advice and support other women.

Condition WhatsApp groups

Groups for adults living with Becker muscular dystrophy, Charcot-Marie-Tooth disease, Duchenne muscular dystrophy, Facioscapulohumeral muscular dystrophy, limb-girdle muscular dystrophy and Ullrich congenital muscular dystrophy in the UK.

Parents and carers’ Facebook Group

Parents, guardians and primary carers of children of any age living with a muscle wasting or weakening condition are welcome to join our private Facebook group. It’s a supportive and safe environment to ask questions, meet other parents and carers’ and  support each other.

Virtual Therapeutic Support Groups

We partner with Louise Halling, a professional counsellor and psychotherapist with limb girdle muscular dystrophy, to run groups similar to facilitated peer support. These sessions offer a confidential, supportive space to foster emotional discussions and build connections. They take place over Zoom.

Our 2024 Groups:

  • Partners/spouses of adults with muscle conditions: First session in June.
  • Parents (dads) of children with muscle conditions: First session in September.

After registering, we’ll schedule an online assessment with Louise to discuss your needs and confirm the group’s suitability. Spaces are limited, and a waiting list may apply.

Our Muscle Groups

Local Muscle Groups are our network of support groups across the UK. They’re a great opportunity to share experiences and meet other people affected by muscle wasting and weakening conditions in your area.

We run both in-person and online Muscle Groups across 10 regions of England and in Scotland, Wales and Northern Ireland. 

The groups are a supportive and confidential space where you can ask questions, connect with others and find out more about the support we provide. All are welcome including friends, family and carers.

Other support groups

We have regular meet ups for the muscle wasting community. Some are on Zoom and some are in person.

Where we have upcoming groups you can sign up below. If you can’t see a sign up option please check back as this page is updated regularly.

For more information or to ask questions email communitysupport@musculardystrophyuk.org 

Young Adult monthly catch ups

These monthly catch ups, for people aged 18-30, are a great opportunity to find out more about a particular topic, share experiences and ask questions. Previous catch ups have included employment, living well with a condition, housing and independent living and mental health and wellbeing.

The next group will be in June 2024. Please check back later this month to sign up

Awaaz Support Group

The Awaaz Support Group connects members of the South Asian community, who are affected by muscle wasting conditions. The next meeting in on Monday June 17 at 6pm. 

Grŵp Cefnogi Cymraeg MDUK (MDUK Welsh-language Support Group)

Mae grŵp cefnogi Cymraeg MDUK ar gyfer unigolion, a’u teuluoedd, sy’n byw gyda chyflyrau sy’n nychu cyhyrau neu sy’n gwanhau ac sy’n siarad Cymraeg.

MDUK’s Welsh language support group is for individuals, and their families, who are living with muscle wasting or weakening conditions and who speak Welsh. 

Over 65's Support Group

Open to people aged 65 and over living with a muscle wasting or weakening condition in the UK. The meetings give you a chance to hear about how we can support you, as well as the opportunity to meet others who also know what it’s like to live with a muscle wasting condition. 

Oculopharyngeal Muscular Dystrophy (OPMD) support group

Join our informal support group for people affected by oculopharyngeal muscular dystrophy (OPMD). Members meet annually, usually on Zoom, sharing experiences of OPMD and how it affects them, and offer support and advice to others. 

Bryan Gould, a longstanding volunteer who has OPMD, founded and chairs the group. OPMD is one of the rarest muscle wasting conditions. Before the group started, Bryan had never met anyone apart from his direct family with the same condition.

Myasthenia gravis (MG) support group

Join our informal support group for people affected by Myasthenia Gravis. Members meet regularly on Zoom, sharing experiences of their condition and how it affects them, and offer support and advice to others. 

Amanda Hayes, a longstanding volunteer who has Myasthenia Gravis, founded and chairs the group. Thanks to the support group, Amanda and others with Myasthenia Gravis meet every few months on Zoom.

Duchenne muscular dystrophy (DMD) support group

Join our informal support group on Zoom for people living with Duchenne muscular dystrophy (DMD).