Calling all adults with Duchenne muscular dystrophy and parents of adults with DMD
There is a high risk of learning, behavioural and communication difficulties in Duchenne muscular dystrophy (DMD), as well as problems affecting well-being. This can present as challenges with learning to read, following instructions, paying attention or making friends. It can also be about feeling anxious or depressed.
As an adult living with DMD or a parent of an adult with DMD, would you be prepared to discuss any of these issues in a small-group online setting? Duchenne UK, with the support of the Duchenne Research Fund, are currently adapting the Duchenne care considerations for the UK as part of the DMD Care UK project. In order to make sure these reflect the needs of people with DMD and their families, we are really keen to speak to you! We are holding a focus group for adults with DMD and any parents of adults with DMD on Tuesday 14 September at 6pm. Please consider joining.
This work is being led by Dr Janet Hoskin from the University of East London, author of A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents.
If you would like to take part please contact Janet so that she can give you more information and send you a link for the online meeting: [email protected]
Published on 11 August 2021Share this article Categories Patient care & support