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Action Duchenne National Advocacy Council

Action Duchenne has established a UK wide Advocacy Council. The Council is made up of family members and those living with Duchenne. The NAC meets twice a year and has regular conference call discussions. The overall aim of the NAC is to support and spearhead Action Duchenne's lobbies, round table meetings, campaigns and help to write supporting policy documents.

The NAC is supported by Dr Karen Rafferty from Treat NMD, Nick Catlin CEO and our board of trustees.

Specific objectives include:
To ensure that all patients have access to new medicines and treatments for Duchenne

To act as a strong voice to effect change in standards of care that patients with Duchenne Muscular Dystrophy receive.

To ensure that Internationally agreed  standards of care promoted by Treat NMD are in place throughout the UK clinics

To ensure that Action Duchenne has a strong and powerful voice within the UK parliaments on relevant issues relating to standards of care and the funding for new drugs or treatments

To ensure Duchenne patients and parents are involved in the design of clinical trials and are given information and involved from the beginning of the trial.