To assist with implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases, Rare Voices Australia (RVA) received $1 million over three years from 1 July 2021 to 30 June 2024 to lead the collaborative development of the Rare Awareness Rare Education (RARE) Portal and other education activities. In addition to facilitating the extensive multi-stakeholder consultation process to progress RARE Portal development, these funds have enabled RVA to consult with peak bodies and other experts to produce several education materials, including resource collections and webinars for the following priority populations identified in the Action Plan:
- The Aboriginal and Torres Strait Islander community
- The multicultural/culturally and linguistically diverse community
- The regional, remote and rural community
Resource collections and reports
Resource collections, reports and webinars for each priority population listed above can be downloaded from RVA’s Online Education Portal via the links below.
- RVA Education: Rare Disease Resources for the Aboriginal and Torres Strait Islander Community
- RVA Education: Rare Disease Resources for the Multicultural Community
- RVA Education: Rare Disease Resources for Regional, Rural and Remote Communities
Webinars
- RVA Education: Developing the Rare Disease Resources Collections for Priority Populations
- RVA Education: Developing the ‘Rare Disease Resources for the Aboriginal and Torres Strait Islander Community’ Collection
- RVA Education: Developing the ‘Rare Disease Resources for the Multicultural Community’ Collection
- RVA Education: Developing the ‘Rare Disease Resources for the Regional, Rural, and Remote Community’ Collection
These webinars are intended for peak bodies, organisations, and health care professionals who work with the above communities, RVA’s Partner groups/organisations, and rare disease groups/organisations that wish to engage with the priority populations listed above.
Please note: you will need to register on RVA’s Online Education Portal if you have not already done so to watch the webinars.
Acknowledgements
RVA thanks the National Aboriginal Community Controlled Health Organisation (NACCHO); the Australian Alliance for Indigenous Genomics; the Federation of Ethnic Communities’ Councils of Australia (FECCA); the Australian Multicultural Health Collaborative; and the National Rural Health Alliance for consulting with RVA to inform these education materials.
