The involvement of parent, carer and advocacy groups is a critical component to delivering improved health outcomes for our patients. Effective change can only come about by working together.

A recent example of how groups can work together to make change is the development of the very first Australian National DMD Registry. Duchenne muscular dystrophy (DMD) advocacy groups led by the Duchenne Foundation Australia, in conjunction with the state Muscular Dystrophy Associations, the Muscular Dystrophy Foundation, other support groups and affected families, made representations to state and federal politicians and health ministers to establish a national registry.

Working together will strengthen the voice of those affected by muscular dystrophy, ensure there is adequate funding to support clinical care and research and, most importantly, develop a national framework to ensure excellence in diagnostic methods and clinical management, and equal access to clinical trials and new therapies, for all individuals in Australia and New Zealand affected by neuromuscular disorders.

ANN aims to:

Identify opportunities for fundraising for infrastructure to support network in an ongoing and sustainable fashion

Identify opportunities with Government for advocacy and funding

Develop financial model to distribute funds raised jointly

Develop a proposal for funding:

If you have any comments or queries, please feel free to contact David Jack (Chair, Advocacy/Funding Opportunities).