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Action Duchenne can offer a variety of ways to support you and your family wherever you are in your Duchenne journey.

Please complete the form below to register with us and a member of our Support Team will be in touch with you.

Register for Support

Benefits of registering – What You’ll Get for Free

By registering with Action Duchenne, you will gain access to a wide range of services and support, completely FREE of charge for as long as you and you family need us:

Expert Support and Advice

  • Dedicated Support Team to help with care, wellbeing, housing, education, employment, and equipment grants.
  • Specialist Guidance on health, benefits, and navigating complex systems.
  • Transition Support for young people moving into adulthood and independence.

Science and Research Updates

  • Regular updates from our Science Team on clinical trials, research progress, and new treatments.
  • Opportunities to join webinars and Q&A sessions with leading researchers.

Community and Peer Support

  • Access to a network of families, carers, and individuals who understand your journey.
  • Invitations to virtual and in-person events, workshops, and support groups.
  • Peer support networks and closed Zoom sessions for shared experiences and advice.

Fundraising and Advocacy

  • Information on ways to support the charity and get involved in campaigns.
  • Opportunities to connect with our fundraising team for events and initiatives.

…and more:

  • Resources and guides for every stage of life.
  • Regular newsletters with practical tips and updates.

1 – 1 Support

We have Support Officers available to talk to you over the phone, video chat or WhatApp. Please get in touch at any time by phone: 07535498506

Dads Against Duchenne

Our monthly DAD’s group is about relaxing with other men who are in the same situation. There’s no set agenda each week, it’s as open ended as going to the pub or for a meal with mates.

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Time Out – A Space for Mums

The most common thing we hear from Duchenne mums is the struggle to juggle it all, the pressure to hold it all together and the total lack of any space for themselves. So even if it’s just once a month, Time Out is a space just for you.

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Grandparents Together

Running once a month on a Friday morning, Grandparents Together is a safe space for you to ask all your questions alongside others in the same situation and to have a chat with people who truly understand.

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Group Counselling

We know that being a parent or carer of someone living with Duchenne can be really tough, and we know that it is difficult to find the right support. We are offering an 8 week online group counselling programme, facilitated by a professional counselling. The sessions will cover many aspects of life with Duchenne, such as anxiety, anticipatory grief and coping strategies.

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