We passionately believe that everyone in the UK should get the best standard of care for Duchenne muscular dystrophy (DMD), wherever they live and whatever their circumstances. Families told us that this was not the case, so together with Joining Jack, the Duchenne Research Fund, the John Walton Muscular Dystrophy Research Centre at Newcastle University, and the NorthStar network of neuromuscular experts, we created DMD Care UK, which continues to improve the standards of care for DMD patients and their families.
Our DMD Care UK psychosocial programme developed a referral pathway for children with DMD and patients started to be referred to it in 2023. This year, DMD Care UK also launched a guide on bone care and health for people with DMD and their families.
Our DMD Care UK programme published a new bone health guide for people with DMD and their families.
Our DMD Care UK programme is developing best practice in supporting people with DMD.
We launched a new project to drive better care for nutrition and weight management in DMD. The aim is to develop guidance and materials to support better diet and nutritional management in people with DMD and to gather evidence, through research, of the impact of steroids on weight.
Thank you to Alex’s Wish, the Duchenne Research Fund, and Joining Jack for their incredible support and funding which has enabled our DMD Care UK programme to undertake its crucial work.
A landmark year of achievement and impact