Behind many people living with a systemic autoinflammatory disease (SAID), is someone helping them navigate the challenges that others may never see.

A parent managing their child's unpredictable flares. Parents juggling appointments, medications and the exhaustion that comes with chronic illness. Partners trying to hold it all together and maintain a full time job and being a full time carer. An adult child supporting a parent. Or a family member quietly holding everything together when illness disrupts everyday life.

Caring can mean advocating for someone who isn't being heard, juggling work and family responsibilities, providing practical support during a flare, or simply being there on the difficult days.

And sometimes, caring means putting your own needs aside for so long that you forget you need support, too. You matter and you deserve support.

You don't have to navigate it all alone. There are resources available. Below you will find resources for both Australia and Aotearoa New Zealand. It is also worthwhile checking your local area and state for additional carer groups.

AUSTRALIA

Carer Gateway - Free support services for eligible carers, including counselling, peer support, coaching and assistance exploring respite options.

https://www.carergateway.gov.au/

Carers Australia – National carer advocacy, information and links to carer organisations across Australia.
https://www.carersaustralia.com.au/

Services Australia - Information about Carer Payment, Carer Allowance and other financial assistance for eligible carers.
https://www.servicesaustralia.gov.au/carers

Young Carers Network - Information and support for young people balancing caring responsibilities with education, friendships and their own lives.
https://youngcarersnetwork.com.au/

Rare Voices Australia - Information, advocacy and resources for people affected by rare diseases and their families.
https://rarevoices.org.au/

Aotearoa New Zealand

Carers New Zealand - The best starting point for unpaid family carers. Offers practical information, advice, carer wellbeing resources and links to support.

https://carers.net.nz

Disability Support Services

Information about respite, Carer Support funding and Individualised Funding for eligible people with disabilities and their families. This is particularly useful when a carer needs a break from day-to-day responsibilities.

https://disabilitysupport.govt.nz/carers

Work and Income Guide for Carers

A useful guide to possible financial assistance, including income support, help with additional costs, disability-related allowances and assistance for people caring for children.

https://msd.govt.nz — Guide for Carers

Health New Zealand | Te Whatu Ora

Explains the Carer Support Subsidy, which can help eligible full-time carers arrange relief care or other approved respite options.

https://healthnz.govt.nz — Carer Support Subsidy

Care Matters

Workshops and online information designed to help carers look after their own health and wellbeing while supporting another person.

https://carematters.org.nz

Rare Disorders NZ

The National peak body organisation, supporting the 300,000 New Zealanders with a rare disorder and the people who care for them. We offer a platform to link people to information and rare disorder groups specific to their disorder, and help people navigate the health system.

https://raredisorders.org.nz/