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:
- The proposal will seek infrastructure support for personnel with combined research/network roles – to coordinate network activities including database registry and website development, development of nationwide coordinated diagnostic network, increased clinical trials capability, coordinate protocols, coordinate training.
- Clinical personnel will not be funded as that should fall within the hospital funding. However as a group we can strongly advocate for funding for multidisciplinary clinics in each state.
- TREAT-NMD diagnostic costing data to be incorporated into proposal for funding to demonstrate cost efficiencies
- Identify where standards are not being met and then outline what is required
If you have any comments or queries, please feel free to contact David Jack (Chair, Advocacy/Funding Opportunities).