Improving the lives of people with

Primary Immune Deficiency

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AusPIPS

By patients, for patients

Improving the lives of people with Primary Immune Deficiency and their carers through advocacy and support

Our purpose is to advocate and support Australians living with Primary Immune Deficiency and associated chronic illnesses.

AusPIPS is a fully tax endorsed health promotion charity, which is registered with the Australian Charity and Not for Profit Commission (ACNC).  

Supported by an unconditional educational grant from CSL Behring (Australia) Pty Ltd.

What is PID?
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Celebrating 10 Years Of Advocacy & Support

We're proud of our impact in supporting Australians living with Primary Immunodeficiencies

  • Advocated for flexible treatment options, including home-based SCIg, through submissions with Blood Matters to the Independent Health and Aged Care Pricing Authority for inclusion in the general list of in-scope public hospital services. Funding for SCIg commenced on 1 July 2024.
  • Advocated for anti-viral options, including immunodeficient patient access to COVID-19 monoclonal antibody treatment Evusheld, opening up access to 400,000 at-risk individuals nationally
  • Supported a parent-led submission for Severe Combined Immunodeficiency (SCID) inclusion in the newborn screening program. SCID newborn screening programs are now in place in all states and territories enabling faster, more accurate diagnoses. This in turn allows early treatment, saving the lives of babies in Australia.
  • Represented patient voices in healthcare decision-making including in the National Blood Arrangement review
  • Helped shape Australia’s National Immunodeficiency Strategy

What people say


“As a parent of a child living with a rare disease it’s challenging to find help and support. It also took a long time to get a formal diagnosis and a treatment regime which worked for PID. Organisations like AusPIPS can help to make a difference in pointing people in the right direction and working to advocate for change. Without support from charities and other patients that had been down the road before us, I would have been lost.”
Anon - NSW
“There have been a number of occasions since I was diagnosed with CVID, that I've felt very vulnerable and disempowered, mainly when in hospital, and especially when things have gone wrong. Previously I have tried to follow up through available formal complaint processes but without any success and somewhat to my detriment. Finally having an organisation such as AusPIPS, that can advocate and speak up on my behalf, gives me much excitement and less fear for the future.”
Anon - VIC