Mental Health and Wellbeing Support for Australians Living with a Rare Disease
Please note: In the event of an emergency, call an ambulance on 000 or these support lines:
Lifeline 24-Hour Counselling – 13 11 14
Aboriginal and Torres Strait Islander People – 13 YARN (13 92 76)
Suicide Call Back Service – 1300 659 467
Living with a rare disease does not only impact a person’s physical health; it impacts every facet of their life, including their mental health and wellbeing.1 People living with a rare disease, including their family and carers, often experience ongoing stress and uncertainty, high burden of care, and feelings of despair, isolation and grief.
Mental health, and social and emotional wellbeing, needs to be integrated into rare disease care and support.1 It is essential that people living with a rare disease, including families and carers, receive the mental health supports and services they need.
This page contains information on mental health services and resources available in Australia. If you are experiencing difficulty receiving or understanding your diagnosis or accessing support, please talk to your doctor, or contact the RARE Helpline. The RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. You can also direct health professionals to the Supporting the Mental Health and Wellbeing of People Living with a Rare Disease page on the RARE Portal.
Rare disease support groups/organisations play an important role in providing peer, social and emotional support to people living with a rare disease. Rare Voices Australia’s (RVA) A-Z Support Directory lists relevant support groups/organisations for individual rare diseases, where available.
The information on this page is intended as a guide only. If you are aware of any additional information that may benefit stakeholders with an interest in this page or another page on the RARE Portal, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.
Finding a Mental Health Specialist
There are many different types of trained mental health professionals you can find to assist you. Your general practitioner (GP) can help with finding the right information, access to treatment and general support for your mental health and wellbeing. Mental Health Treatment Plans can help with the costs of getting mental health support. Please speak with your GP to learn more.
Resources for People Living with a Rare Disease
The following ‘Living with a rare disease digital mental health resources’ factsheets include information about digital mental health and provide several digital mental health services to support the rare disease community. The factsheets were developed in consultation with people living with a rare disease and mental health clinicians involved in digital mental health support.
Digital Mental Health Fact Sheet [PDF]
Digital Mental Health Fact Sheet – Easy English [PDF]
Digital Mental Health Fact Sheet – Plain Language [Word]
Resources for Rare Disease Group/Organisation Leaders
‘Applying Mental Health First Aid in a Rare Disease Context’ Online Course – this resource assists those working with the rare disease community with Mental Health First Aid (MHFA) and was developed in consultation with people living with a rare disease. The course complements MHFA training.
General Mental Health Services
Services and resources tailored to the rare disease community directly addressing mental health and wellbeing are not widely available. General mental health and wellbeing services that are not specifically customised for the rare disease community are listed below.
- Head to Health helps everyone access the mental health and wellbeing services that are right for them. It makes it easier to navigate and choose the most suitable care options, whether that’s face-to-face, via phone, or online. Contact number: 1800 595 212
- Headspace offers free and confidential online counselling support for young people aged 12 to 25 years through webchat, email, or via phone. People have the option to connect with a mental health clinician without a referral. Contact number: (03) 9027 0100
- Beyond Blue helps all people in Australia achieve their best possible mental health. Contact number: (03) 9810 6100
- Black Dog Institute is a medical research institute that provides resources, support, education and services on mental health. Contact number: (02) 9382 4530
- Intellectual Disability Mental Health Connect provides information on services and support for people with intellectual disability, their supporters and professionals. This is a NSW initiative but is available to all Australians.
- Griefline is Australia’s national grief and loss support hub. They offer a variety of services that provide people with the opportunity to access free grief support and resources, regardless of where they are or what time of the day it is. Contact number: 1300 845 745
- Kids Helpline is Australia’s free and confidential 24/7 online and phone counselling service for young people aged 5 to 25. Contact number: 1800 55 1800
- 13YARN is the first national crisis support line for mob who are feeling overwhelmed or having difficulty coping. Contact number: 13 92 76
- WellMob provides social, emotional and cultural wellbeing online resources for Aboriginal and Torres Strait Islander people. Contact number: (08) 9370 6336
- QLife is a counselling and referral service for LGBTIQ+ individuals. Contact number: 1800 184 527
Please visit the ‘Mental Health’ section on the individual State and Territory Services pages for state-specific services and resources.
Support for Families and Carers
Carer Gateway is a free Australian-wide service dedicated to supporting Australia’s carers. Carer Gateway supports unpaid carers in a variety of ways, including with day-to-day activities, planning for the future, and carer wellbeing. Contact number: 1800 422 737
Disability Gateway provides information and services to help people with disability, their family, friends and carers, to find the support they need in Australia. Contact number: 1800 643 787
Siblings Australia promotes better support for siblings of children and adults with disability. Contact number: (08) 8253 4936
Please visit the ‘Other Support for Families/Carers’ section on the individual State and Territory Services pages for state-specific support information.
Resources for Health Professionals
Living with a rare disease can have a significant impact on a person’s mental health and wellbeing. The following resources provide reliable resources, information and support pathways for health professionals working with people living with a rare disease. See the Supporting the Mental Health and Wellbeing of People Living with a Rare Disease for more information.
Case Study Videos
Maria, Elijah and Angela’s stories highlight that for people living with a rare condition, challenges to mental health and wellbeing may surface at any time. Such challenges may also impact those caring for people with a rare or undiagnosed rare condition.
Angela’s Case Study
Elijah’s Case Study
Maria’s Case Study
The case studies have provided a snapshot of some of the experiences of people living with a rare disease. Although consideration has been made to provide diverse representation, not all groups were captured. It is important to acknowledge that some people in the community face additional challenges not explored in these videos. The following resources may be useful in helping health professionals to reflect upon and consider other challenges people may face.
The resources below have been codesigned with people living with a rare disease, health professionals and rare disease experts for health professionals working with people living with a rare disease.
This resource, co-designed with people living with a rare disease, provides education to health professionals and includes a module on mental health and wellbeing.
A free, innovative video conferencing model that connected providers to the multidisciplinary RArEST Project team. Two series of this clinical Community of Learning Practice were held in 2022 and 2023 with resources available online, including a module on mental health and wellbeing.
Australia’s first-ever National Recommendations for Rare Disease Health Care (the Recommendations) outline how health professionals can provide high quality care to people living with a rare disease, their families, and other carers. The Recommendations have been accepted as a clinical resource by the Royal Australian College of General Practitioners (RACGP), the Australian Primary Health Care Nurses Association (APNA) and have been endorsed by Rare Voices Australia and 10 professional and peak bodies. They include recommendations for Australian health professionals on mental health and wellbeing.
References
Australian Government. Department of Health. National Strategic Action Plan for Rare Diseases. Canberra; 2020. 63 p. Available From: https://www.health.gov.au/sites/default/files/documents/2020/03/national-strategic-action-plan-for-rare-diseases.pdf
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