Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability.^1,2

A significant number of Australian families are navigating the challenge of caring for a child with medical and disability needs while also raising other children. In an Australian survey of almost 200 adult siblings, 84% reported family stress was an issue during their childhood.³ Siblings Australia has highlighted gaps in Australian data regarding the number of siblings of people with disabilities.

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.⁴ 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. See the Mental Health and Wellbeing Support for Australians Living with a Rare Disease webpage for several resources that may be helpful.

A range of general supports and resources are available for parents and carers supporting siblings of a child living with disability. These include online information for both siblings and parents, counselling services, peer support groups, and programs specifically designed to support siblings.

Most of the resources listed below are not rare disease-specific but may still be helpful.

Belongside Families – Tips for Supporting Siblings

Belongside Families provides a range of free programs and information to support families raising children with disability, developmental delay, autism, and rare and genetic conditions.

• Watch the Belongside Families and Genetic Alliance Australia – Rare Siblings Five-Part Video Series – Supporting Siblings: Session 5: Medically Complex Families Info Session.
• Read the 8 tips for supporting siblings.
• Read personal stories with tips on supporting siblings of children with disability, including rare disease disability at Belongside Families’ website.

Carers Australia

For a brief list of strategies to support siblings of children with a disability, download this Carers Australia PDF.

Little Dreamers

Little Dreamers is an Australian Young Carer organisation that provides a range of key support programs co-designed with young people in caring roles. Programs include peer support, school holiday programs for siblings (available in Victoria, New South Wales and Queensland only), and education support, including schoolwork and studies. Parents may find these supports for siblings of children with rare disease disability helpful.

Raising Children Network

The following articles contain information and guidance on how to support siblings of children with disability:

• Supporting siblings: when your child has disability or ADHD.
• Responsibilities, roles and rules for siblings of children with disability or autism.

Siblings Australia

Siblings Australia offers education and support to empower parents. They provide several programs and resources for siblings and their families, some of which are listed below.

• Siblings Australia’s Ways to Support Siblings webpage contains information and ideas on ways to support siblings to grow up strong and secure.
• SibWise is an online learning program that aims to assist parents, carers, educators and disability professionals to better understand and respond to sibling needs and challenges.
• SibSupport is a service offering individual and group counselling, workshops and seminars and flexible online or face-to-face sessions for both siblings and their families.

Stepping Stones Triple P

Stepping Stones is a free online scientifically proven government-funded flexible program for Australian parents of children living with disability. It includes information for parents on how to support the whole family. For more information about Stepping Stones, visit the Triple P website.

Young Carers Network

The Young Carers Network is a nationally coordinated resource to raise young carer awareness, provide information, and direct young carers to appropriate pathways for support. They provide information about peer and financial supports for young carers up to 25 years of age, including siblings of children with disability.

The information on this page was informed by a program developed collaboratively by Tuberous Sclerosis Australia (TSA) and Rare Voices Australia (RVA) as part of the Rare Disease Disability Project (the Project). The Project was funded by the Australian Government through the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).

1. Australian Government. Australian Public Service Commission. Definition of disability. September 2019. Accessed 12 June 2025. https://www.apsc.gov.au/working-aps/diversity-and-inclusion/disability/definition-disability
2. Australian Bureau of Statistics. Disability, ageing and carers, Australia: Summary of findings. July 2024. Accessed 12 June 2025. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release
3. Strohm K. (2019). Australian Institute of Family Studies. Support needs of siblings of children with disability. Siblings Australia Mapping Project. https://aifs.gov.au/resources/short-articles/support-needs-siblings-children-disability
4. 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