Campaigning definition ‘An organised course of action to achieve a goal‘
Action Duchenne lead our families, friends and supporters to work together to make change happen.
We know that through working together we can get our voices heard. We campaign in parliament to improve access to treatments and medicines. We work tirelessly to improve standards of care for people living with Duchenne, which directly improves their quality and length of life.
Action Duchenne’s Access to Medicines and Campaigns Strategy is targeted at the UK Government, NHS and treatment access policy makers.
Action Duchenne played a key role in the Managed Access Agreement for translarna; the first treatment licensed for those living with Duchenne and eligible with nonsense mutations. This was a long-fought campaign with ourselves and the community at the forefront. We are considered a true stakeholder by the key decision makers. We have lead the way and have a proven track record in making change happen.
We build strong partnerships with the community to maximise our shared knowledge with our membership organisations Genetic and Neurological Alliance. We seek to influence policy by identifying factors that must be changed and bring about change by influencing policymakers, key decision makers in the access of potential treatments and also the NHS environment. We influence policy across the health service, public health and ensure it supports the quality of life for all young people living with Duchenne Muscular Dystrophy.
Take action
- Call us 020 7250 8240
- Contact your MP
