This collection of helpful links is for multicultural people living with rare diseases. These links have been put together as part of the Australian Government’s plan to help Australians 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. It will:
Give you a place to start learning.
Make it easier to get the help you may need for a rare disease.
Everyone, no matter where they come from, should get the same good care and information about their health.
RARE Helpline
If you are looking for information about rare disease, you can contact the RARE Helpline on +61 (0)499 549 629. The 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 in Australia. If you want help that’s more specific to where you live, you can use Ask Izzy and put in your postcode.
Many groups in Australia help multicultural people. These national organisations may be able to support multicultural people living with rare diseases.
The Australian Multicultural Health Collaborative works together with people from different cultural backgrounds to address health and wellbeing concerns across Australia. They partner with patients, health services, doctors, researchers, schools, and groups to help make sure everyone gets what they need.
Migrant & Refugee Health Partnership brings people together to tackle problems that stop migrant and refugee communities from getting good health care.
The Multicultural Youth Advocacy Network Australia (MYAN) speaks up for multicultural young people and provides advice to the Australian government on how they can help.
The Refugee Servicing Network helps people who have recently come to Australia as refugees or on special visas to help them settle and live in Australia.
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.
Information on newborn screening available in English, Arabic, Chinese (Traditional), Indonesian, Japanese, Korean, Khmer, Serbian, Turkish, and Vietnamese.
Pregnancy Testing
The links below help you to understand the tests that you can do before you get pregnant and when you are pregnant.
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 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.
Information on health care if someone gets very sick or can’t talk or decide things for themselves. Information is available in many languages, including Arabic, Cantonese, Chinese, Croatian, Greek, Hindi, Italian, Japanese, Macedonian, Mandarin, Polish, Russian, Serbian, Spanish, Tagalog, Vietnamese, and Turkish.
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 who need palliative care and their friends, family and carers.
The CareSearch project has made helpful materials in 58 different languages. These materials explain what palliative care is and cover topics like planning, different types of services, taking care, managing pain and symptoms, special groups, what’s important, end of life, money help, and dealing with grief and loss.
The Multicultural Communities Council of South Australia has made a podcast series in English, Cantonese, Croatian, Greek, Mandarin, Spanish, and Ukrainian. The podcast talks about things like palliative care, planning ahead, different kinds of services, managing pain and symptoms, what’s important, and getting financial help.
A collection of Multicultural Health Communication Service resources available to the community on death and dying, translated into multiple languages.
“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 can give information about the help you can get for your disability and explains how you can get it.
The National Ethnic Disability Alliance (NEDA) speaks up for the rights of people with disabilities and their families, especially those from different cultural backgrounds. NEDA provides help to people all over Australia.
Several resources on various disability topics such as managing your disability, knowing your health care rights, making complaints about care, and important definitions in easy English – all translated by the Health Translations Network Victoria.
The ‘Speak My Language’ podcast, which can be listened to in 25 different languages, features people from different cultural backgrounds discussing how to lead a good life while living with a disability.
These videos explain who can get help from the NDIS, how to get ready to ask for NDIS help, what to do if you want to change something or disagree with a NDIS decision, and how to manage your NDIS plan. These videos come in English, Mandarin, Vietnamese, Arabic, Karen, and Turkish.
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.
Because rare diseases are complicated, people who have them may need extra help when they get older. These tools explain the help available for older people from the multicultural community.
The Centre for Cultural Diversity in Ageing gets money from the Department of Health and Aged Care through the Partners in Culturally Appropriate Care (PICAC) program. They make sure the aged care sector understands and follows policies and practices that include people from different cultures.
You can find helpful information for people from the multicultural community in over 18 languages on the Federal Government’s My Aged Care directory page.
Dementia Australia offers help and information for the multicultural dementia community. They have translations in 38 different languages, videos, and tools that respect different cultures.
The Department of Health and Aged Care has information about care for older people. Find information about tests, rights, programs, and help you can get.
The Aged Care Quality and Safety Commission (the Commission) makes sure that care for older people in Australia is good, fair, and easy for everyone. You can get in touch with the Commission if you want to share your thoughts, worries, or if you’re not happy with your care.
The Commission has a page on their website for people who get care that tells them about their rights and how they are kept safe when they are getting 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 the help you can get advocating for yourself if you are a multicultural person.
Australia has a set of rules that tell people what they can expect when they get health care. This webpage has information about the Australian Charter of Healthcare Rights and is available in over 20 languages.
You can find information in 19 different languages on how to get regular and emergency health care, what health interpreters do, and services for kids and families.
The Centre for Culture, Ethnicity & Health made this resource to help people understand the differences between Medicare and Centrelink cards, how to book a doctor’s appointment, what bulk billing is, and the difference between a general practitioner/doctor and a specialist. Translated into 13 different languages.
A collection of information available in community languages, including what you should know about your health care, and what to do when you are worried or have a complaint. Provided by the Multicultural Health Communication Service.
Tips on how people can advocate for their health care when talking with doctors translated into 15 different community languages. Provided by the Australian Commission on Safety and Quality in Health Care.
It’s important to find trustworthy health information on the internet when you’re speaking up for yourself. This booklet, available in 19 different languages, shows you how to find good information online and where you can get help. It’s made by the Australian Commission on Safety and Quality in Health Care.
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.
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.
Most rare diseases last all of a person’s life 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 set of information is for people with rare diseases who would like to know what additional support may be available to them.
Useful information in five different languages about how community pharmacists can help people with long-term health issues. Provided by the Multicultural Health Communication Service.
Learning how technology can help with a long-lasting condition may help to 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.
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 to make the most of your medical visits.
Easidose helps you to understand your medicines when 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.
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.6
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 Lifeline(13 11 14) at any time on 13 11 14.
If your life is in immediate danger, please call 000
The Embrace Project, managed by Mental Health Australia, focuses on mental health and preventing suicide for people from different cultural backgrounds all over Australia. They also offer lots of resources in many languages.
The Transcultural Mental Health Centre has created many resources and guides about mental health and wellbeing in different languages for the multicultural community. They cover things like practical guides, information about medicines, support for caregivers, and what to do in a crisis.
This Way Up provides a collection of online tools in different languages that help people to learn about ways to deal with their feelings, how to cope with stress, talking about their mental health, taking care of themself, and what to do in a crisis.
italk Studios and Beyond Blue have made cartoon videos about mental health experiences in the multicultural community. You can watch these videos in Arrente, Sudanese, Arabic, Dari, and Karen.
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 a rare disease often experience impacts on their quality of life and mental wellbeing.5 Multicultural people may experience extra barriers when providing care.
These resources are for people who provide informal support and care to someone with a rare disease and focus on supports and services available to the carer.
Carer Gateway offers many videos, podcasts, and written materials to help multicultural caregivers. They have these resources in different languages. You can also find information about the National Relay Service and phone interpreters.
Carers Australia shares information about the challenges multicultural carers face in the community. They also have links to help people find support in their local area.
Services Australia tells you about payments and supports available to unpaid carers. This information can help unpaid carers to get carer’s allowance and services if people are eligible.
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 a multicultural background. Some of the information is available in multiple languages.
You can find details about government help and payments in over 80 languages on this webpage. Services Australia also provides information on how to access interpreters and translation help.
The NDIS provides funding to eligible people diagnosed with a disability to ensure they are able to connect better to health, social and community groups. Information on how to apply for NDIS is available in the Disability and National Disability Insurance Scheme (NDIS) section of this collection.
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 multicultural community in Australia. This makes it harder for multicultural people to get help with genetics. Below are links to general information about genetics and genomics, as well as information on an ongoing project making resources in different languages for the multicultural community.
The Centre for Population Genomics is working on an ongoing project looking at genetics and genomics for the multicultural community in Australia. They aim to help the multicultural community understand genes and genomics better.
The National Health and Medical Research Council has 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.
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 get 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 get into them.
A set of videos made for the multicultural community on clinical trials. These videos cover things like what clinical trials are, what you will be asked to do, keeping your information private, and where to go to find out more.
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.
The Australian Clinical Trials Alliance explains research and clinical trials for consumers in plain English using videos, stories and consumer guides.
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.
RVA is looking for information about data ownership made for the multicultural community. If you have any resources to recommend, please share them using the Suggestions and Feedback form.
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/
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
