Immune Deficiency Foundation of Australia (IDFA)

30/04/2026

This World PI Week we aimed raise awareness for immunodeficiencies, and the delay to diagnosis.

Hear from our CEO, Carolyn Dews, and our Canberra member, Lauren, as they highlight the challenges of life with an immunodeficiency.

Thanks WIN News Illawarra for helping us share this story.

29/04/2026

Day of Immunology - 29 April! 🙌

As the arms race between disease and immunologists continues to rage, it is more important than ever to grow public knowledge and interest in immunology.

The first Day of Immunology (DoI) was held on April 29th, 2005. It was launched by the European Federation of Immunological Societies (EFIS) to strengthen the general public's awareness of immunology as a basis for individual health and well-being.

Help us celebrate today by sharing this post and raising awareness for immunology!

29/04/2026

28/04/2026

24/04/2026

Real stories have the power to change lives. 💙

Mum of two, Lauren spent nearly a decade searching for answers — facing recurring infections, multiple hospital visits, and years of uncertainty.

It wasn’t until her mid-30s, after the birth of her daughter, that she was finally diagnosed with Common Variable Immunodeficiency (CVID).

Now, with home-based treatment, Lauren is getting back to a more normal life — something she credits to the healthcare professionals who supported her along the way.

💬 “They gave me the confidence to manage my condition… and helped me get back to a more normal life.”

Lauren also acknowledges the dedicated nurses who guided her through her treatment, making it feel manageable and seamless.

Stories like Lauren’s highlight the importance of earlier diagnosis — and the vital role healthcare professionals play in improving care.

👉 Learn more about Primary Immunodeficiency:https://www.idfa.org.au/

23/04/2026

⏳ On average, it takes 9 years for IDFA members to receive a diagnosis.

An earlier diagnosis can mean:
✔️ Better health outcomes
✔️ Fewer complications
✔️ Improved quality of life

This World PI Week, we’re encouraging everyone—especially healthcare professionals—to Think PI Sooner by launching our digital resource to support healthcare professionals in recognising the signs of immunodeficiency earlier.

Download your copy here: https://www.idfa.org.au/idfa-products/think-pi-sooner/

23/04/2026

🤝 Meet the speakers: Safer shared air in the home webinar

What can you do to improve the safety of your home and what is monitoring revealing about the spaces we live in? Our founder, Plum Stone, will explore this and more with our fantastic panel.

Prof Rebecca Bentley
Director, Healthy Housing CRE
The University of Melbourne

Rebecca is an internationally recognised researcher working at the intersection of housing, the built environment, health, and epidemiology. She leads the Victorian Community of Practice of the NHMRC Healthy Environments and Lives Network and sits on the Global Commission for Healthy Indoor Air.

Jo Reynolds
Lived experience representative
Jo has a complex web of health problems, multiple of which intersect to make safe indoor air a crucial priority for her and her family.

Pippa Soccio, PhD
Senior Research Scientist, CSIRO

Pippa leads the Social Impact and Living Labs team in the Energy Performance Group at CSIRO and heads the Apartment Energy Behaviour Study, a four-year project monitoring energy use, indoor environmental quality, and design factors across 430 apartments nationwide.

Join us on Tuesday 28th April at 12:00pm AEST
Register now: https://bit.ly/sap-home

21/04/2026

Think PI Sooner - We Can't Wait 🌍💙

This World PI Week, we’re proud to amplify the voices of our incredible community members and shine a light on the importance of earlier diagnosis and the healthcare heroes who make it possible.

Too many people living with primary immunodeficiency (PI) face long delays in getting answers. With greater awareness and earlier recognition, we can help change that — improving outcomes and helping more people get the care they need, sooner.

Join us as we kick off World PI Week with our special campaign video, sharing member voices from our community and celebrating the clinicians and nurses who support them every day. Share this message and help spread the word!

For more information, head to our website: https://www.idfa.org.au/world-pi-week/ 💙

Jeffrey Modell Foundation Australasian Society of Clinical Immunology and Allergy
Rare Voices Australia

16/04/2026

This morning, IDFA members Ebony and her dad, Leigh, were featured on ABC Victoria Central, sharing Ebony’s story and the incredible support she receives at school while living with a rare disease.

They joined presenter Fiona Parker and Ebony’s school principal, Andrew, highlighting the importance of understanding, inclusion, and community in helping children with an immunodeficiency like Ebony safely attend school.

We’re so grateful to the ABC Central Victoria for helping shine a light on rare diseases, and to Ebony’s school for creating a supportive environment that allows her to thrive. A special thank you to Leigh and Amanda, whose dedication ensures Ebony can live as full and normal a life as possible.

🎧 Listen to the full episode here: https://www.abc.net.au/listen/programs/centralvic-breakfast/breakfast/106556808

15/04/2026

✨ We’re just one week away from World PI Week 2026! Here are some easy and important ways you can get involved:

🔹Share our campaign materials, including this year’s poster, banner, and resources, to help spread the word

🔹 Amplify community voices by sharing our Before & After Stories throughout the week

🔹 Engage healthcare professionals by directing them to our tools and educational materials

🔹 Encourage Policymakers - send Before and After stories to your local political representative or health minister's office to help put World Primary Immunodeficiency Week on their radar

🔹 Encourage the media – share our campaign press release to catalyze important global coverage

Every action – big or small – helps drive meaningful progress for the Primary Immunodeficiency community.

Let’s make this the most impactful World PI Week yet. Together, We Can’t Wait to create change. 💙

15/04/2026

💻 Webinar | Think PI: Living Well with Immunodeficiency: Challenges, Support and Daily Strategies

In recognition of World PI Week, this webinar brings together an immunologist and an IDFA Member for a meaningful conversation about life with primary immunodeficiency.

Through shared insights and personal experience, they will explore the challenges of diagnosis, navigating care, and the realities of daily life with PI - while offering practical advice, hope and support for the broader community.

📅 Date: Wednesday, 29 April
⏰ Time: 7 pm AEST
📍 Location: Online

Can't attend? Register to get the recording!

📧 Send questions to info**@‌https://ow.ly/kCLA50Vw8wF** in advance to shape the webinar content.

🔗 Register here: https://us02web.zoom.us/webinar/register/WN_HUiAivP-RNy97M1BcSWsjA #/registration

14/04/2026

😔 Did you know?

There are more than 400 forms of primary immunodeficiency, ranging widely in severity and falling into nine main groups.

Primary Immunodeficiency often presents in the form of “common” infections, sometimes leading physicians to treat the infections while missing the underlying cause, allowing the infections to recur, and leaving the patient vulnerable to vital organ damage, physical disability, and even death.

The first step in diagnosing primary immunodeficiencies consists of a detailed evaluation of the immune system through several types of testing, including blood and/or vaccine tests, reviewing medical and family history, and physical examination.

Let's do our part to support those who are affected by this condition and help spread awareness.