This collection of helpful links is for Aboriginal and Torres Strait Islander people who live with rare diseases. These links have been put together as part of the Australian Government’s plan to help people with rare diseases. This plan is called the National Strategic Action Plan for Rare Diseases (the Action Plan).1 If you’d like to know more about the plan, or Rare Voices Australia (RVA), visit RVA’s website.
The links on this page aren’t all about rare diseases. They also have information on things connected to rare diseases. This collection is meant to help Aboriginal and Torres Strait Islander people living with rare diseases. It will:
- Give you a place to start learning.
- Make it easier to get the help you may need for a rare disease.
If you are looking for information about rare diseases, you can contact the RARE Helpline on +61 (0)499 549 629. The RARE Helpline is open Monday to Friday 9:00am to 5:00pm (AEST). For more information, please visit the RARE Helpline webpage.
Please note: All links listed here are for services that can help people across Australia. If you want help that’s more specific to where you live, you can use Ask Izzy and put in your postcode. If you are looking for information about rare diseases, please go to the Rare Awareness Rare Education (RARE) Portal.
The National Aboriginal Community Controlled Health Organisation (NACCHO) and the Australian Alliance for Indigenous Genomics were consulted when RVA was working on this collection of resources.
Suggestions and Feedback
We invite people to provide suggestions and feedback about this page and the resources listed by using our Suggestions and Feedback form.
- Australian Government Department of Health. National Strategic Action Plan for Rare Diseases [Internet]. 2020 p. 1–63. Available from: https://www.health.gov.au/sites/default/files/documents/2020/03/national-strategic-action-plan-for-rare-diseases.pdf
- Zurynski YA, Elliott EJ. Challenges of transition to adult health services for patients with rare diseases. The Medical Journal of Australia [Internet]. 2013 Jun 17;198(11):575–6. Available from: https://pubmed.ncbi.nlm.nih.gov/23919688/
- Jackson A. Disability and Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. [Internet]. Rare Voices Australia. New South Wales, Australia: McKell Institute; 2019 [cited 2023 Jul 13] p. 1–31. Available from: https://rarevoices.org.au/wp-content/uploads/2020/09/DisabilityRareDisease2019.pdf
- Centre for Culture, Ethnicity, & Health (CEH). Consumer Participation and Culturally and Linguistically Diverse Communities [Internet]. Consumer Participation and Culturally and Linguistically Diverse Communities. Centre for Culture, Ethnicity, and Health; 2017 [cited 2021 Aug 6] p. 1–32. Available from: https://www.ceh.org.au/wp-content/uploads/2019/10/Consumer-Participation-and-CALD-Communities-ST-20191016.pdf
- Spencer-Tansley R, Meade N, Ali F, Simpson A, Hunter A. Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop. BMC Health Services Research [Internet]. 2022 May 14;22(1). Available from: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-022-08060-9
- Sandilands K, Williams A, Rylands AJ. Carer burden in rare inherited diseases: a literature review and conceptual model. Orphanet Journal of Rare Diseases [Internet]. 2022 Dec 9 [cited 2023 Jan 28];17(1). Available from: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02561-w
- Frederiksen SD, Avramović V, Maroilley T, Lehman A, Arbour L, Tarailo-Graovac M. Rare disorders have many faces: in silico characterization of rare disorder spectrum. Orphanet Journal of Rare Diseases [Internet]. 2022 Feb 22 [cited 2022 Apr 13];17(1). Available from: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02217-9#:~:text=Approximately%2080%25%20of%20rare%20diseases,facing%20in%20rare%20disease%20diagnostics%3F
- German Ethics Council. Big Data and Health – Data Sovereignty as the Shaping of Informational Freedom [Internet]. Berlin; 2017 [cited 2023 Jul 20] p. 1–52. Available from: https://www.ethikrat.org/fileadmin/Publikationen/Stellungnahmen/englisch/opinion-big-data-and-health-summary.pdf