Rare Disease Resources for the Aboriginal and Torres Strait Islander Community

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.

RARE Helpline

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.

There are groups that help Aboriginal and Torres Strait Islander people. Here are some national organisations that may support Aboriginal and Torres Strait Islander people living with rare diseases.

National Aboriginal Community Controlled Health Organisation (NACCHO)

NACCHO speaks up about the health interests of the Aboriginal and Torres Strait Islander community.

To find your nearest Aboriginal Community Controlled Health Organisation, use NACCHO’s Service Map.

Australian Indigenous HealthInfoNet

Australian Indigenous HealthInfoNet has lots of information on different subjects. You can start your search by using HealthInfoNet as a starting point.

When you’re trying to have a baby, and when you are pregnant, getting tests and taking care of yourself is important. Finding and treating rare diseases fast helps to make sure babies don’t get sicker or pass away. 

The links below can give you information about the tests you can do before and during pregnancy that will help find rare diseases.

Baby Coming You Ready?

Baby Coming You Ready? is a great website that contains sections for mums, dads, and health practitioners covering issues around antenatal and newborn screening tests.

Pregnancy Testing

The links below help you to understand the tests you can do before you get pregnant and when you are pregnant. 

These resources have been made for everyone. 

Newborn Testing

The links below explain the tests that can be done to check your baby for diseases.  

These resources have been made for everyone. 

Moving from children’s healthcare to adult healthcare or getting special care for serious illnesses can be hard. When someone has a rare disease, moving from one system to another can be even tougher. Your health care team may call these changes ‘transitions’.

The disease and care needed might be complicated, and new doctors and nurses may not know about the disease. This can make it tricky for people with rare diseases to think about the future and how it can make them and their families feel.2 

These links can help with some of the big life changes people with rare diseases may face moving from one form of care to another.

raisingchildren.net.au

raisingchildren.net.au has helpful guides on taking care of children who have rare diseases. They also talk about what happens when children with rare diseases grow up and need different care.

This resource has been made for everyone.

Transition Care Network

Transition Care Network (the Network) is a New South Wales (NSW) Department of Health program that provides information on transition care principles, fact sheets and a resource library.

This resource has been made for everyone.

Advance Care Planning for Aboriginal and Torres Strait Islander Peoples

Advance Care Planning Australia explains how Aboriginal and Torres Strait Islander people can make sure their family and health care team know what they do and don’t want for their health care. Tools include ‘Taking Control of Your Health Journey’, a guide to advanced care planning.

Aboriginal and Torres Strait Islander Peoples Palliative Care Resources

When someone is so sick they won’t get better, they can get a special type of care. This care is called palliative care. Palliative Care Australia has gathered culturally safe information on the palliative care journey, including Final Footprints: My Culture, My Kinship, My Country and the Aboriginal and Torres Strait Islander Discussion Starter.

Palliative Care

The Aboriginal Health and Medical Research Council of NSW created the ‘Journey to Dreaming Toolkit’ and ‘Diary’, which assists Aboriginal and Torres Strait Islander people to prepare for their end-of-life journey.

Patient, Family and Community Journeys – CareSearch

CareSearch offers easy-to-understand and culturally sensitive information about palliative care for the Aboriginal and Torres Strait Islander community.

Paediatric Palliative Care 

Palliative care is a special kind of care for people who are very sick and may not get better. It’s about helping them feel as comfortable as possible. Palliative Care Australia and Palliative Care New Zealand have worked together to create helpful facts and resources for young people that need palliative care and their friends, family, and carers.

This resource has been made for everyone.


“While not every person with a rare disease will have an associated disability, those who do will often require assistance in activities of daily living. However, unlike many other conditions that cause disability such as intellectual disability or paraplegia, rare diseases often progress over time and change the nature of an individual’s needs.”

– Angela Jackson, ‘Disability & Rare Disease: Towards Person Centred Care
for Australians with Rare Diseases’, 2019 3

People living with a rare disease who have a disability should be able to get help for their disability.

These tools provide information about the help you can get for your disability.

First Peoples Disability Network Australia

First Peoples Disability Network Australia (FPDN) works across the whole country. It’s run by and for Australia’s First Peoples who have disabilities, along with their families and communities. FPDN can help you learn how to speak up for yourself, find someone to help you advocate, and they also have a podcast called the Yarning Disability podcast.

NDIS Resources

Menzies School of Health Research has various materials on the NDIS, including a ‘Yarning about NDIS’ video, and other brochures that explain how to get started with an NDIS application and care plan.

Benny Boy Goes Bush

Benny Boy Goes Bush is a short film and flashcard set made by FPDN. It’s a respectful way to help Aboriginal and Torres Strait Islander kids with disabilities and their families get ready to take part in their culture. The community worked together to make this resource.

NDIS Ready Resources

The Aboriginal Health Council of Western Australia has videos and brochures about the NDIS. These resources include stories from people who use the NDIS, information on how the NDIS can help you, and how to apply for it.

Disability Gateway

Disability Gateway lists lots of places you can get disability help across Australia. It has information guides and factsheets about all different parts of life with a disability and explains the NDIS.

This resource has been made for everyone.

Because rare diseases are complicated, people who have them may need extra help when they get older. These tools give you details about the help available for older people from Aboriginal and Torres Strait Islander communities.

Aged Care Support for First Nations People

The Department of Health and Aged Care explains the aged care system for Aboriginal and Torres Strait Islander people. They talk about changes, programs, and services available, and how to find help nearby. You can also watch videos on what the aged care system can do, and real stories, such as Aunty Shirley’s Story and Uncle Bob’s Story to learn from.

Support for Aboriginal and Torres Strait Islander People

myAgedCare offers a step-by-step guide for Aboriginal and Torres Strait Islander people and families as they begin their aged care journey. The guide covers topics like how to get an aged care assessment, how aged care services can help, and where to find help.

Aboriginal and Torres Strait Islander Resources

The Aged Care Quality and Safety Commission provides resources on how to speak up if Aboriginal and Torres Strait Islander people experience issues with their aged care.

Speaking up for others is called advocacy. Speaking up for yourself is called self-advocacy. People who help those with rare diseases, like doctors and carers, might not know much about these diseases and how they affect people. That’s why people living with rare diseases might need to advocate for themselves or their family to make sure they get what they need.4 

These links have information and tools that help you learn to speak up for yourself and others. The links also tell you about how you can advocate for yourself if you are an Aboriginal or Torres Strait Islander person.

Voices Together

Voices Together is an Australian website where you can learn about speaking up for yourself. It has information to help you understand and get better at self-advocacy. Voices Together have collaborated with the Aboriginal and Torres Strait Islander community to provide Aboriginal and Torres Strait Islander Resources.

First Peoples Disability Network Australia

First Peoples Disability Network Australia provides information made for Aboriginal and Torres Strait Islander people who want to speak up for themselves in the ‘Advocacy’ section of their website.

Self Advocacy Kit

Advocacy for Inclusion (AFI) have made a four-part toolkit on learning to speak up for yourself. The kit has videos, things to think about, and guides you can download.

This resource has been made for everyone.

Speak Up

Aged and Disability Advocacy Australia (ADA) is a group in Queensland that helps people speak up for themselves. They have a large collection of information about self-advocacy.

This resource has been made for everyone.

Most rare diseases last a person’s lifetime and are hard to understand. People living with rare diseases may need more help and planning for their health than others.1 The government provides support for people with long-lasting and complicated conditions to get extra help. This information is for Aboriginal and Torres Strait Islander people with rare diseases who would like to know what additional support may be available to them. 

715 Health Check

The Department of Health and Aged Care shares details about a free yearly 715 Health Check for all Aboriginal and Torres Strait Islander people. Doing this check every year can help find problems early and take care of any ongoing health issues. You can learn how, where, and why to do your check by watching the 715 Health Check video.

Health Checks – Deadly Choices

Deadly Choices explains the aims of a Health Check, what it involves, rewards for getting one, and where you can get a check.

Digital Health

The Aboriginal Health & Medical Research Council of NSW (AH&MRC) has made digital health booklets for young people, adults, and caregivers. These booklets explain My Health Record in a way that respects different cultures and is easy to understand.

AH&MRC also has a detailed blog post that explains My Health Record, what it can do to help, and how it can be used.

Living Longer Stronger

AH&MRC have created a toolkit of resources to help manage long-lasting and complicated health issues. It includes booklets and specialist appointment tracker pamphlets.

These resources are made to be used with an Aboriginal health worker, but you can also use them on your own.

Primary Health Networks

The Department of Health and Aged Care share details about Primary Health Networks (PHNs). PHNs help groups of people who need special care to get the right health care. You can find your nearest PHN on the interactive PHN Map. Knowing what a PHN can help with is important. You can learn more from the ‘PHNs and Integrated Care’ brochure.

This resource has been made for everyone.

Digital Health Learning

Learning how technology can help with a long-lasting condition may make you feel better and reduce stress. Australian Digital Health Agency’s Online Learning Portal has lessons on My Health Record, the My Health App, and electronic scripts for people to use.

This set of videos from My Health Record explains how to use your record.

This resource has been made for everyone.

Question Builder

healthdirect has a checklist that helps people build a set of questions about their health worries that they can take to their doctor or specialist. Using a checklist will help you make the most of your medical visits.

This resource has been made for everyone.

Easidose

Easidose helps you to understand your medicines if you struggle to read English. Easidose uses colours for different medications and pictures to show how much to take, how often and for how long. It can also tell you other special things you need to know about the medications you’re taking.

This resource has been made for everyone.

Living with a rare disease can affect how someone feels and their overall wellbeing. The stress can also affect the people who are caring for them. When someone has a rare disease, it may take a while to find out what’s wrong and get proper help, and this can make people living with rare diseases feel unsure and alone.5

Getting help for how you feel is important. The links below may connect you with the right resources. These resources are not for emergencies but can still be helpful.


If you need help right now for your feelings and wellbeing, you can call 13Yarn (13 92 76) for free at any time.

13Yarn provides telephone support for Aboriginal and Torres Strait Islander people from Aboriginal and Torres Strait Islander people.

If your life is in immediate danger, please call 000.


WellMob

WellMob has a wide range of online resources that cover social, emotional and cultural wellbeing for Aboriginal and Torres Strait Islander people.

AIMhi – Aboriginal and Islander Mental Health Initiative

The Menzies School of Health Research has made a set of resources for the mental health and wellbeing of Aboriginal and Torres Strait Islander people. These include the StayStrong app, plans for mental wellness, and yarning on various topics.

Mental Health First Aid Guidelines: Aboriginal and Torres Strait Islander People

These Mental Health First Aid Guidelines offer useful tips for those who want to talk about mental health and wellbeing with an Aboriginal or Torres Strait Islander person. They cover different topics like how to communicate, depression, psychosis, suicide, self-injury, trauma, drinking, drug use, and gambling.

Manual of Resources for Aboriginal and Torres Strait Islander Suicide Prevention

Created by the Centre of Best Practice in Aboriginal and Torres Strait Islander Suicide Prevention (CBPATSISP), this manual is a set of helpful resources and tools. Aboriginal and Torres Strait Islander people and others can use it to help good mental health, emotional wellbeing, and prevent suicide. The manual is divided into sections for individuals, those giving support, communities, and health professionals.

Resources for Young Aboriginal and Torres Strait Islander People

Headspace provides information for young Aboriginal and Torres Strait Islander people on social and emotional wellbeing. You can find videos, fun interactive activities and a place to connect with others in their online community.

The Healing Foundation

The Healing Foundation is an organisation run by Aboriginal and Torres Strait Islander people across Australia. They raise awareness of practices that are trauma-aware and focused on healing. This helps communities recover, and it helps government, policymakers, and workers understand how they can help with healing. You can watch the ‘Story of the Healing Foundation’ video to learn more about what they do.

Caring for someone living with a rare disease can often be tough physically, mentally, and emotionally.

Carers are often involved in:  

  • Making and going to medical appointments. 
  • Giving medicine and helping with therapy.  
  • Providing personal care.
  • Advocating for the person with the condition.6

Many carers for people living with rare diseases often experience impacts on their quality of life and mental wellbeing.5 Aboriginal and Torres Strait Islander people may experience extra challenges when providing care. These resources are for people who provide informal support and care to someone with a rare disease.

Carer Gateway

Carer Gateway is run by the Department of Social Services for all carers. Information on different supports, counselling, skill development and caring tips is available. Carer Gateway has a specific section for First Nations Carers.

Aboriginal and Torres Strait Islander Families

Carerhelp has developed a series of useful resources for Aboriginal and Torres Strait Islander people who are caring for a sick family member. Carerhelp covers getting prepared to care for someone who is very sick, caring for someone who is finishing up, and grief and after caring.

Carers Australia

Carers Australia provides information on various topics important to caring, programs, projects, resources, and updates on things that affect carers.

This resource has been made for everyone.

Caring for Someone – Services Australia

Services Australia tells you about payments and supports available to unpaid carers. This information can help unpaid carers to get a carer’s allowance and services if people are eligible.

This resource has been made for everyone.

The Australian and State Governments offer different kinds of help for people living with rare diseases. This can be money to help live, help for carers, and other kinds of support.

The resources below have information about government help available to people from an Aboriginal and Torres Strait Islander background.

Medicare Services for Indigenous Australians

Services Australia explains how the Aboriginal and Torres Strait Islander community can get help with healthcare costs through Medicare. They talk about Getting Started, using the Indigenous Access Line for additional help and the Indigenous Access Program.

Closing the Gap

The Department of Health and Aged Care’s Closing the Gap Pharmaceutical Benefits Scheme (PBS) Co-Payment Program can benefit Aboriginal and Torres Strait Islander people living with rare diseases by making medicine cheaper.

Health and Disability

Services Australia explains the programs and payments for those who are currently managing their health and disability.

This resource has been made for everyone.

National Disability Insurance Scheme (NDIS)

The NDIS gives funding to eligible people with a disability to help them connect better to health, social, and community groups. Information on how to apply for the NDIS is available in the Disability and National Disability Insurance Scheme (NDIS) section of this collection.

This resource has been made for everyone.

Around 80% of all rare diseases are believed to come from genes.7 Knowing about genes, and how they work can help people with rare diseases to:

  • Ask for tests that look at genetics and talk about genetic medicines that may help them; and 
  • Talk to their family about conditions that run in the family and the chance they may also have a rare disease too.7  

There are not many resources on genomics and genetics written specifically for the Aboriginal and Torres Strait Islander community in Australia. Here is some general information on genetics and genomics, as well as some resources developed by Aboriginal and Torres Strait Islander people.

National Centre for Indigenous Genomics

The National Centre for Indigenous Genomics (NCIG) is Australia’s centre for Aboriginal and Torres Strait Islander genome research. ‘NCIG: An Introduction’ explains what genome research is and what the NCIG does.

IG-HeLP

IG-HeLP is a set of tools for Aboriginal and Torres Strait Islander people to learn about genetics and genomics. ‘Your Blood, Your Storyis a short video explaining genetics.

Genomic Information for You and Your Family

Australian Genomics presents a series of easy learning materials for people to learn more about DNA, genes and genomics. Resources include a video on what the patients go through, booklets introducing reading genes (called gene sequencing) and telling others about your genes.

This resource has been made for everyone.

Genomics Resources for Consumers

The National Health and Medical Research Council has lots of fact sheets that explore different things, including an introduction to the human genome; genome sequencing; how things affect your genes; personalised medicine and genetics; and genetic tests you can do yourself.

This resource has been made for everyone.

Genes and Genetics Explained

Better Health Channel uses plain English to explain genes, chromosomes, and how genetics and changes in genes can make conditions run in a family.

This resource has been made for everyone.

Clinical trials are important to people living with rare diseases. About 95% of rare diseases don’t yet have a treatment.1 For people living with rare diseases, joining a clinical trial may be the only way they can try treatment.

What clinical trials are, how they work, and how to get involved can be confusing. These resources provide a good starting point for learning more about clinical trials and how to access them.  

The Lowitja Institute

The Lowitja Institute is the only health research institute in Australia owned by Aboriginal and Torres Strait Islander people. They offer the Aboriginal and Torres Strait Islander community access to past research articles, information on taking part in research, and helpful tools for researchers. There’s also an animated video called ‘Good Decisions Grow From Great Research’ that explains why research is important.

The Australian Institute of Aboriginal and Torres Strait Islander Studies

The Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) gathers and researches the diverse history, cultures, and heritage of Aboriginal and Torres Strait Islander people. AIATSIS also provides guides and resources to help with research and finding information in the AIATSIS collection.

Keeping Research On Track: A Guide for Aboriginal and Torres Strait Islander Peoples About Health Research Ethics

This booklet from the National Health and Medical Research Council explains the research process and how Aboriginal and Torres Strait Islander people can make sure what is important to them is considered in medical research.

Australian Clinical Trials – For Consumers

The Department of Health and Aged Care shares information on clinical trials for consumers. Topics covered include what is a clinical trial?; phases of clinical trials; how clinical trials work; who can be part of a clinical trial; and what happens when a trial is complete.

This resource has been made for everyone.

Australian Clinical Trials Alliance – Consumers

The Australian Clinical Trials Alliance explains research and clinical trials for consumers in plain English using videos, stories and consumer guides.

This resource has been made for everyone.

When people go to the doctor and access services, a lot of information is collected about them.8 Understanding who owns the data that is collected, and how this knowledge is used or could be used, will help people living with rare diseases make smart choices around their data and safety.

Indigenous Data Sovereignty Readiness Assessment and Evaluation Toolkit

The Indigenous Data Sovereignty Readiness Assessment and Evaluation (ID-SOV) checks and judges how Aboriginal and Torres Strait Islander priorities, values, and practices are included in the steps that manage, create, use, keep, and protect data about Aboriginal and Torres Strait Islander people.

Why You Need To Know About Indigenous Data Sovereignty

Explores what Indigenous data sovereignty means and why it’s important to the Aboriginal and Torres Strait Islander community.

What are ICIP Protocols?

In this episode of ‘Law Way’, Terri Janke talks about Indigenous Cultural and Intellectual Property (ICIP) rules. ICIP helps keep the wisdom and traditions of the Aboriginal and Torres Strait Islander community safe. It also makes it easier for the community to work with others in research.

Indigenous Cultural and Intellectual Property

The Lowitja Institute explains Indigenous cultural and intellectual property in this information sheet, including what ICIP is, why it’s important, protecting ICIP and where to learn more.

Data Sovereignty – You Decide How Your Data Gets Used

The International Data Spaces Association discusses data sovereignty.

This resource is intended for all audiences.

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. You can learn more about how we collaborated and what we looked at when adding resources to this collection by reading the ‘Developing the ‘Rare Disease Resources for the Aboriginal and Torres Strait Islander Community’ Collection‘ Report.


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References

  1. 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
  2. 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/
  3. 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
  4. Centre for Culture, Ethnicity, & Health (CEH). Consumer Participation and Culturally and Linguistically Diverse Communities [Internet]. Centre for Culture, Ethnicity, & 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
  5. 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
  6. 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
  7. 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
  8. 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