DMD Care UK has launched an essential survey which will help us to understand the reality of Duchenne muscular dystrophy care across the UK.
This will be the first comprehensive questionnaire aiming to understand DMD patients’ and parent/caregivers’ experiences. It will allow us to gain a clear picture of care across the country, so we know where the gaps are, where standards differ between centres, and what we need to do improve care for all.
If you live with DMD or are a parent or caregiver to someone who does, please take part in the survey today. With your help, we can work to transform care and increase the health, quality of life, and life expectancy of all DMD patients.
To take part, you must be a patient, or parent/caregiver of a person with DMD and receive your main neuromuscular care in the UK. Anyone who completes the survey will have the option to be entered into a raffle for a £50 Amazon gift card.
If you would prefer to fill out the survey over the phone, please email Philippa Farrant from the Duchenne Family Support Group (DFSG) or call the DFSG helpline on 0800 121 4518 to arrange an appointment.
Thank you to the DMD Care UK Family Focus Group who helped with the preparation of this survey, and to the following organisations: Duchenne Family Support Group, Duchenne Now, Smile with Shiv, Alex’s Wish, Pathfinders Neuromuscular Alliance, Decipha.