Living or caring for someone with a rare disease can affect your daily life, work, and income. Financial and practical supports are available to help you and your family. Most of the supports listed are not rare disease–specific.

The Australian Government provides a range of income support payments. Some of these are for people who are unable to work, looking for work, or studying. This may include:

• Disability support pension
• Job seeker payment
• Child disability assistance payment
• Youth allowance
• Mobility allowance

If you’re unsure where to start:

• Services Australia can help you understand what you may be eligible for, and how to apply.
• Use Centrelink’s Payment and Service Finder tool to see what payments or services you may get.
• Contact Services Australia or visit your nearest service centre for more information.

You may be able to access support to reduce the cost of healthcare, travel, or equipment. For example:

• Concession and health care cards for cheaper health services and medicines.
• Patient Assisted Travel Schemes to help eligible patients with some travel costs.
• Essential medical equipment payment to help with costs to run medical equipment or medically required heating or cooling.
• Continence Aids Payment Scheme to help pay for continence products.
• A Chronic Diseases Management Plan is a care plan to help people manage their chronic disease. You may be able to get Medicare benefits for allied health services. Speak to your general practitioner (GP) to see if it is suitable for you.
• My Aged Care if you are older or caring for someone who needs aged care support.

If you care for someone living with a rare disease, these supports may be available:

• Services Australia: Caring for Someone includes information on financial supports for carers.
• Carer Gateway provides emotional and practical support for carers, including respite care.
• The Young Carer Bursary Program provides financial support to young carers (aged 12–25 years) to continue their education.
• Belongside Families provides free, practical and supportive programs to help people navigate disability parenting.
• Siblings Australia provides support and resources for siblings of children and adults with disability.

Some rare disease organisations offer financial and practical supports. Some have a helpline to assist people in getting the right support. You can find a list of rare disease organisations in the Rare Disease Directory.

Some charitable and not-for-profit organisations provide grants, scholarships, and other assistance programs. For example:

• Variety: The Children’s Charity provides grants, scholarships, programs and events for children.
• Ronald McDonald Family Retreats provide family retreats for families with an ill or injured child, or those grieving the loss of a child.
• The Steve Waugh Foundation provide grants and respite camps for children and young adults (0-25 years).
• The Starlight Children’s Foundation offers programs aimed at creating fun, joy and laughter for very ill children.
• Make-A-Wish helps fulfill the wishes of children with critical illness.

More information:

National and State Services page – resources and services available in Australia and in each state and territory

Healthdirect Australia: Financial support during long-term illness