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Action Duchenne

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  • Donate
  • About Us
    • Our Purpose
    • What We Do
    • Our Impact
    • Our Team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Online Group Counselling Programme
    • Recently diagnosed
    • Children and Young People
    • Summer 2026 In-Person Family Days
    • Schools
    • End of Life and Bereavement
  • Community Summit
    • Action Duchenne Community Summit 2026 (Previously International Conference)
    • Highlights from the Action Duchenne Conference 2025
  • News, Webinars and Blogs
    • News
    • Webinar Series 2026
    • Webinar recordings
    • Bite-Sized Duchenne Science Live
      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
      • Crucial Genetic Terminology
      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
    • Hear From Our Community
  • Support Us
    • Friends of Action Duchenne
    • Upcoming Events and Challenges
    • Give in memory and help us support every family, every time.
    • Organise your own event
    • Fundraising at school
    • Donate by cheque and post
    • Welcome to our Runner Hub
Female carriers and non-carriers

Being a female carrier

You are here: Home / What is Duchenne? / Supporting You / Help and support / Being a female carrier

Female Carrier leaflet

Action Duchenne, in collaboration with Sue Kenwrick, Principal Genetic Councellor, Addenbrooke’s Hospital, Cambridge, have produced a ground-breaking leaflet for female carriers ‘Being a Carrier for Duchenne Muscular Dystrophy’.

This leaflet was distributed to all Neuromuscular Centres, Genetic Services and groups working with families affected by Duchenne muscular dystrophy.

The inspiration for this leaflet came from workshops for Duchenne carriers and other female relatives held by Action Duchenne, as well as sibling events and discussions arising from the ‘What about Us’ element of the Lottery funded Takin’ Charge project.

The format of the community-led leaflet follows frequently asked questions that come up when carriers or relatives are given an opportunity to discuss the issues involved.

Manifesting Carriers

Read Jess’s blog about her daughter Wren ‘How did I get here?’

For further support please contact us on 07535 498 506 or email us at info@actionduchenne.org

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