New care guidelines

DMD Care UK launches new recommendations focused on delivering the right bone care at the right time

The best for all

We passionately believe that everyone in the UK should get the best standard of care for 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, and the NorthStar Network, we launched DMD Care UK in 2020.

It’s a nationwide initiative aiming to ensure that every person living with DMD in the UK has access to the best care, no matter where they live.

The project brings together expert clinicians and the patient community to agree, communicate and implement DMD standards of care recommendations.

Guidance on care for bones

This year, guidance was published for patients on the best standards of care regarding bone health.

It is crucial that people with DMD receive the highest standards of care for their bones as they are at high risk of developing osteoporosis, where bones become weak and fragile and break or fracture more easily. The guidance recommends a range of measures to keep bones healthy for longer.

The guidelines aim to ensure that every DMD patient in the UK can access the recommended care through the NHS. A library of guidelines for the correct care of people with DMD is available, including recommendations on cardiac care.

Duchenne UK Impact Report 2023

A landmark year of achievement and impact