Welcome to IDFA

Living with a primary or secondary immunodeficiency?
Do you find yourself looking for extra support and acceptance?
Let’s face it, living with an immunodeficiency impacts on all aspects of your health and lifestyle.

Education, Awareness, Advocacy

Through the Immune Deficiencies Foundation Australia (IDFA)
you can meet people who are living through similar experiences.
And by accessing our education, awareness and advocacy programs you will
discover a new world of information. At IDFA we strive to be that “extra” for you.

SCID Newborn Screening

Help IDFA advocate for national funding for Severe Combined Immunodeficiency (SCID) Newborn Screening.


We offer a range of resources, educational programs, webinars, patient meetings and conferences for Australians living with immunodeficiency.


Increasing awareness of immunodeficiency through awareness campaigns, community education and influencing policy makers.


Advocating on a range of issues significant for patients with primary and secondary immunodeficiencies.

About IDFA

IDFA is a national not-for-profit and leading peak body offering education, advocacy and awareness for Australians living with primary or secondary immunodeficiencies. In conjunction with our community-focussed model of care IDFA assists in achieving improved patient outcomes and quality of life. With the support of our medical advisory panel and through national and international relationships IDFA is a respected organisation within the medical and patient community.

Member Stories

Oli’s Story

As Oli is so sporty, he has struggled to accept his diagnosis and doesn’t want his health to affect his sport. Oli has shared his story in the hope that there may be other young people out there who feel the same.

Bianca’s family diagnosis

With two children, both suffering from recurrent infections and various other illnesses, Bianca instinctually knew there was an issue. A referral to an immunologist confirmed her suspicions.

Jude and IRAK-4 deficiency

A mother shares her family’s harrowing journey towards her sons diagnosis of IRAK-4 deficiency, a rare form of primary immunodeficiency. This diagnosis was a result of early medical intervention and a team of doctors who understood Jude’s symptoms enough to realise his immune system was compromised.

Young Adult Members Conference: 23 July 2022

Itinerary Saturday 23 July, 9am to 3pm 9am-9:05am: Welcome. Acknowledgement of Country.  9.05am-9:15am: Introductions. Presenter: Carolyn Dews, IDFA CEO. 9.15am-9:45am: 3 x Young...

2022 World PI Week (22-29th April)

What is World PI Week?  World PI Week offers an opportunity to inform and educate health policy-makers, schools and families, and the general public about primary...

2022 Rare Disease Day

 What is Rare Disease Day? Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to...

Get Involved


You can make a difference in the lives of Australians living with a rare disease.

Become a Member

Join the IDFA community to access a range of resources, events and connect with patients and carers.

Latest Events

We’re developing a range of services and events for IDFA members. Keep watching our News & Events page for updates.


The IDFA has been a great way to connect with other families with similar experiences, which has allowed access to a wealth of knowledge. The IDFA annual conference was also an amazing opportunity to learn and provided so much information. The IDFA has offered so much support, including Carers' events and resource material, which are great to give to kids' schools. Their Facebook groups have been a great place to ask questions and advice. So pleased to have found the IDFA, and would 100% recommend it to anyone seeking advice, support, information or resources.

Javeria, NSW

When I got sick in 2011 I felt so alone, I had never heard of CVID. Then it was recommended to contact IDFA. I found people all over Australia that were the same as me. It has been a godsend.

Beth, VIC

My name is Row and I am from NSW. After years of recurrent infections saw an amazing new immunologist who diagnosed me with a rare primary immunodeficiency. I found IDFA via Google and have found the support and resources from IDFA amazing. IDFA very quickly sent me a pack of great resources and also some resources for my GP. The Facebook group has been great, have learnt so much and receiving a phone call to check in made me feel supported and welcomed.

Row, NSW

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