The Australian Alliance for Rare Diseases (AARD), in partnership with people living with a rare disease, will be the Australian lead for rare disease research, education and training, implementing the priorities identified in the Department of Health’s National Strategic Action Plan for Rare Diseases (2020) (Action Plan). It will demonstrate an authentic person-centred partnership to support rare disease advocacy and will leverage national and international collaborations.
Through authentic partnership with the rare disease sector, the Australian Alliance for Rare Diseases will establish a national, multidisciplinary alliance that drives positive health and wellbeing outcomes for all Australians living with a rare disease, irrespective of where they live.
Several initiatives exist in response to addressing rare diseases in Australia, however, national coordination is lacking. There is very little infrastructure for Australians living with a rare disease, this includes registries, clinical trials, networks and centres of expertise. Furthermore, no body or organisation is charged with the responsibility for implementing the Action Plan or measuring its impact.
- We are taking the lead & implementing the National Strategic Action Plan for Rare Diseases.
- We are aligning with international efforts, cementing ourselves as the Australasian Hub for Rare Disease.
- We are accountable and responsible to the Australian Government and public.
- We work in authentic partnerships with those with lived experience of rare diseases and the rare disease sector.
AARD is a partnership of Australian organisations; progress will be achieved by building national rare disease research infrastructure, leveraging investment already made in the rare disease sector and strengthening national and international collaborations and partnerships which includes government, industry, philanthropy and community.