As we reduce in size we will concentrate on the key issues that come through our helpline and advocacy service and build on the fact that since 2013 our campaigning has secured 102 new NHS neuromuscular specialist roles and saved a further 16 from being lost to the NHS. This equates to an investment of £6.9m per year. This is an essential role we play to ensure people living with muscle-wasting conditions have the best possible support available.

We will continue to fight for access on the NHS to the new treatments that are emerging for some muscle-wasting conditions. In partnership with other rare disease groups we will be seeking changes to the way treatments are assessed across the UK to ensure people living with muscle-wasting conditions don’t lose precious time fighting for access.

We will also continue to ensure the issues we campaign on and the concerns of people affected by muscle-wasting conditions are raised at the highest level, through our continued engagement with the UK and devolved governments and our role in co-ordinating the four cross-party groups on muscular dystrophy in the four parliaments and assemblies.

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