We received some patient info leaflets on being a Duchenne carrier last week – just wanted to let you know that the Genetic Counsellors in the department were very pleased with them and will make good use of them” – Nicole Gossan PhD, Pre-Registration Clinical Scientist (Genomics), Molecular Genetics Laboratory, Cheshire and Merseyside Regional Genetics, Liverpool Women’s Hospital

We hold Carrier workshops and support sessions and have produced a ground-breaking leaflet ‘Being a Carrier for Duchenne Muscular Dystrophy’.

Carrier leaflet

Action Duchenne, in collaboration with Sue Kenwrick, Principal Genetic Councellor, Addenbrooke’s Hospital, Cambridge, have produced a ground-breaking leaflet ‘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.

Please click here to take a look at the leaflet online (please note the following amendments to the links below)

Carrier workshops

Our carrier workshops are a great opportunity to exchange information, share advice and get support from other families. In the past the workshops have attracted female Carriers of the Duchenne gene, non-carriers and also partners and friends. 

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