On 29th February, Rare Disease Day, we were pleased to be part of the 2024 national meeting for DMD Care UK.
More than 130 clinicians and 25 patient representatives are now involved in DMD Care UK, giving their time and expertise across no fewer than 13 working groups – covering areas such as cardiac care, respiratory, psychosocial, emergency care, orthopaedics, nutrition, physiotherapy and more.
Through the project, we look at how to address the gaps in care, drive research to inform care, aim to publish consensus guidelines and have them endorsed by key industry bodies, and work to disseminate education and training resources for the clinician and patient community.
DRF director of operations Sheli Rodney sits on the psychosocial working group, which aims to identify the type of psychological or psychiatric care and support patients and families may need, gather data, and develop guidelines and best practice.
The DRF funds DMD Care UK together with our friends at Duchenne UK and Joining Jack, working hard to improve care for everyone living with Duchenne muscular dystrophy across the UK.
Click here to learn more about the project as a whole.
Click here to learn more about the psychosocial working group.