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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.

 

Support Groups

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.

WhatsApp groups for every age

If you’re living with a muscle wasting or weakening condition in the UK, our WhatsApp support groups connect you with others who share similar experiences. The groups are split by age, so you can connect with people at a similar stage in life for support, understanding, and community.

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.

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.

Awaaz WhatsApp group

The Awaaz Support Group connects members of the South Asian community, who are affected by muscle wasting conditions.

Join our WhatsApp group to share experiences, chat and make friends.

Parent's WhatsApp groups

For parents of children with muscle wasting conditions. This is a safe space where you can share experiences, offer advice, and find comfort in knowing you’re not alone on this journey. Whether you’re looking for practical tips, emotional support, or just a place to vent.

Facebook Groups

Are you a parent, grandparent, or carer of someone with a muscle-wasting or weakening condition? Join our private Facebook groups for a supportive and safe environment where you can ask questions, connect with other families and carers, and support each other.

A smiling women sits at a table at an information day

Virtual Therapeutic Support Groups

We partner with Louise Halling (professional counsellor and psychotherapist) and Julie Oates (psychotherapist), 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:

  • Siblings of people living with a muscle wasting condition
  • Parents who are living with a muscle wasting condition

After registering, we’ll schedule an online assessment 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 any upcoming events 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.

Awaaz Support Group

The Awaaz Support Group connects members of the South Asian community, who are affected by muscle wasting conditions. They meet on Zoom and in person. 

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).

Support and information events
Filter by event type
Northern Ireland Muscle Group
Wednesday 13 November 2024
Civic Centre, Lagan Valley Island, Lisburn, Co. Antrim, BT27 4RL
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.
Read Northern Ireland Muscle Group
Myasthenia Gravis support group meeting
Tuesday 19 November 2024
Zoom
Join our informal support group for people affected by Myasthenia Gravis on November 19 2024 over Zoom.
Read Myasthenia Gravis support group meeting
Join us at Scottish Parliament
Thursday 21 November 2024
Scottish Parliament Building, Edinburgh
If you could tell members of Scottish parliament (MSPs) one thing that needs to improve about neuromuscular care, what would it be?
Read Join us at Scottish Parliament
Wales Muscle Group
Thursday 21 November 2024
Swansea Stadium, Plasmarl, Swansea, SA1 2FA
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.
Read Wales Muscle Group
London Muscle Group
Friday 22 November 2024
Zoom
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.
Read London Muscle Group
L-CMD Virtual Information Seminar
Friday 29 November 2024
Zoom
Join us for an informative and supportive webinar focusing on LMNA-congenital muscular dystrophy (LMNA-CMD).
Read L-CMD Virtual Information Seminar
Wales Information Day (Llandudno)
Thursday 13 February 2025
Conwy Business Centre, Llandudno Junction, LL31 9XX
Join us on Thursday 13 February 2025 for our free Information Day in North Wales for adults living with a muscle wasting condition.
Read Wales Information Day (Llandudno)
Information Day in Birmingham
Saturday 8 March 2025
Edgbaston Park Hotel and Conference Centre, 53 Edgbaston Park Road, Birmingham, B15 2RS
Join us on Saturday 8 March for our free information day in Birmingham for adults and parents of children living with muscle wasting conditions.
Read Information Day in Birmingham
Information Day in London
Friday 21 March 2025
Coin St Conference Centre, 108 Stamford St, London SE1 9NH
Join us on Friday 21 March 2025 for our free Information Day in London for adults and parents of children living with a muscle wasting condition.
Read Information Day in London
Scotland Information Day (Inverness)
Saturday 29 March 2025
Birnie Centre, Raigmore Hospital, Inverness, Scotland, IV2 3UJ
Join us on Saturday 29 March 2025 for our free Information Day in Scotland for parents of children living with a muscle wasting condition.
Read Scotland Information Day (Inverness)