Immune Deficiency Foundation of Australia (IDFA)

21/12/2025

📰 December Newsletter 📰

Hello, IDFA community! Our last newsletter for the year is hot off the press, and we can't wait to share all the fantastic updates, insights, and highlights with you!

Highlights in this month's edition:

✨ 2025 Insights and Summary
✨ Genetics Webinar Recording
✨ Upcoming Event: 20 Year Celebration | 28 February 2026

And more...

👉 Dive into the full newsletter here:https://mailchi.mp/idfa.org.au/december-newsletter

To subscribe and receive these emails to your inbox, head over to our website: http://www.idfa.org.au

19/12/2025

🎄 Set Boundaries for a Safer Holiday Season 🎄

The holiday season can be especially challenging for people living with immunodeficiency — with added social, family and health pressures.

Licensed clinical therapist and carer Becky Lenning shares practical guidance on setting boundaries, managing expectations, and prioritising both physical and emotional wellbeing. From navigating misunderstandings about immunodeficiencies to reducing overwhelm, her insights support safer ways to stay connected during the holidays.

💜 Your health matters — and it’s okay to put it first.

👉 Read more:

Change how you interact with family and friends, incorporate calming activities to help you prioritize what is important, and seek support to manage holiday stress.

18/12/2025

🎄✨ Holiday Closure Announcement ✨🎄

As the festive season approaches, the IDFA team will be taking a well-deserved break to celebrate and recharge. Our office will be closed from Friday, 19 December 2025, and will reopen on Tuesday, 6 January 2026.

During this time, if you need to contact the team, please get in touch via our email (info**@‌idfa.org.au**) or by phone (1800 100 198), and we’ll respond as soon as we can.

We wish you a joyful and restful holiday season filled with love, laughter, and good health. Thank you for your ongoing support throughout the year—we can’t wait to connect with you in 2026!

🎁 Happy Holidays from all of us at IDFA! 🎁

18/12/2025

🎄 Christmas Giving with IDFA 🎁

As the festive season approaches, we’re reminded of the power of connection, care and community.

IDFA is a registered charity providing free support, resources and events to more than 2,000 Australians living with immunodeficiency. Every service we offer is delivered at no cost — ensuring no one feels alone or unsupported.

Your donation this Christmas helps us develop vital resources and continue supporting individuals and families navigating life with immunodeficiency. Every gift, big or small, makes a meaningful difference.

🎁 Ways to support:
Donate online (tax deductible)
Share this appeal with your networks
Volunteer with IDFA – Pathways to Giving

Together, we can make this season brighter for our community. 💜
Thank you for your support.

👉 Donate here: https://www.paypal.com/donate/?hosted_button_id=DC4JCDNJ7T7GA

17/12/2025

🦓 Help Us Create Something Powerful for Rare Disease Day 🌈

This Rare Disease Day, we’re bringing our motto “I Don’t Feel Alone” to life — and we’d love you to be part of it.

We’re creating a short, heartfelt video that reflects the strength, diversity and connection within our community. To take part, all you need to do is record a 3–5 second video on your phone, simply saying:

👉 “I Don’t Feel Alone.”

By participating, you’ll help raise awareness of immunodeficiencies and remind others that connection and community matter — especially on Rare Disease Day.

✨ Ready to join in?
Click the link below to complete the form and receive simple instructions.
https://forms.gle/qDKi9kGvSEWb3yna8

15/12/2025

🌈🦓 75 days until Rare Disease Day!

Become a National School Ambassador in 2026 and help raise awareness of primary immunodeficiencies in your school.

Ambassadors can choose from fun, ready-to-use activities:

🖍️ Colouring competition – win a trip to the zoo!
📚 Classroom teaching resources
🎗️ Fundraising and event kits

Share your story, inspire others, and show what strength and resilience really look like.

✅ Sign up today!
https://docs.google.com/forms/d/e/1FAIpQLSeMAEKglMmgWs0UQL7kbkI_A4ESopff7TegFvn6SakN2T3Oqg/viewform

11/12/2025

Recently, our team had the privilege of attending the Illawarra Women in Business lunch to hear from the incredible Jelena Dokic.

What stood out most was her honesty, her strength, and her unwavering commitment to removing shame, judgement and stigma for all. Jelena spoke with genuine vulnerability about her greatest achievement — finding her voice — and the journey it took to get there.

Here are a few messages that deeply resonated with us:

✨ Be fearless — and human.
We will fall, fail and face setbacks. The power lies in getting back up and staying aligned to your purpose and character.
✨ Vulnerability is a superpower.
It creates connection, builds trust, and sets you free.
✨ Self-worth starts from within.
For years, Jelena never felt “good enough” and sought external validation. Her turning point came when she realised self-belief had to begin with her.
✨ Be someone’s Todd.
Jelena spoke about Todd Woodbridge — a friend who stood beside her, believed in her and asked, “What are we going to do?” A reminder of the impact we can have when we show up for others.

What inspired us most was her refusal to be defined by her past. Jelena isn’t a victim — she is a survivor, a thriver, and a powerful role model for what resilience looks like in real life.

“You can’t be what you can’t see,” she reminded us — highlighting the importance of representation, visibility and dreaming boldly.

We left feeling grateful — for the honesty, the perspective, and the reminder that strength and compassion can, and should, exist side by side.

03/12/2025

We were so grateful to be part of the discussion yesterday with Rare Voices Australia and today to recognise International Day of People with Disability - Australia.

02/12/2025

📰 November Newsletter 📰

Hello, IDFA community! Our last newsletter for the year is hot off the press, and we can't wait to share all the fantastic updates, insights, and highlights with you!

Highlights in this month's edition:

✨ Rare Disease Day Campaign
✨ IDFA Shorts | Travel Edition
✨ Upcoming Event: End of Year Celebration for IDFA Members! Tuesday 16 December

And more...

👉 Dive into the full newsletter here:https://mailchi.mp/idfa.org.au/november-newsletter-8336512

To subscribe and receive these emails to your inbox, head over to our website: http://www.idfa.org.au

30/11/2025

💻 Webinar | Immunodeficiency Insights: Understanding Genetics: Carrier Screening and Targeted Support

Genetics can play an important role in understanding immunodeficiencies, guiding family planning, and accessing the right support. This webinar will explore what carrier screening is, how it works, and what support is available for individuals and families navigating genetic information.

Join us as experts share their insights into genetic testing and advocacy pathways, alongside an IDFA member who will provide a lived-experience perspective. Together, they’ll unpack the practical, emotional, and medical aspects of genetics in immunodeficiencies.

📆Date: Thursday 4 December 2025
⏰Time: 7pm AEDT
📍Location: Online

Can't attend? Register to get the recording!

📧 Send questions to info**.org.au** in advance to shape the webinar content.

🔗Register here: https://ow.ly/Vpn150XfpXm

20/11/2025

Advocating for Plasma Donations: Alice and Baby Eva’s Story

As part of the Plasma for Life campaign, IDFA has been working closely with Australian Red Cross Lifeblood to raise awareness about the vital need for plasma donations. We’re proud to share Alice’s story — about her baby, Eva — who recently spoke with a journalist from 9Honey to advocate for people living with immunodeficiency.

Eva was diagnosed with a rare genetic disorder called LRBA deficiency, which impairs the normal regulation of the immune system. In Eva’s case, it caused her immune system to constantly attack her own body — particularly her stomach.

We’re incredibly grateful to Alice and all our members who have shared their personal stories. Your voices help highlight the importance of plasma donations and continue to raise awareness for those living with immunodeficiencies across Australia.

https://honey.nine.com.au/latest/plasma-donors-baby-eva-lrba-deficiency-exclusive/00c08d6d-7cbd-4575-91bd-f86e535a228c

19/11/2025

💡 From 68 to just 5 days in hospital

Since its launch, Garvan’s CIRCA program has radically accelerated the diagnosis of challenging immune diseases, transforming patient care. The average length of hospital stays for patients diagnosed through the program has plummeted from 68 days in 2015 to under 5 days today!

This incredible progress is thanks to research that is uncovering the causes of these conditions, one gene at a time. 🧬

However, this work is far from finished – the vast majority of people with rare immune diseases are still waiting for answers. Your gift today can help us progress this vital research.

➡️ Learn how you can help deliver even more life-changing diagnoses: https://ow.ly/aJQV50Xqgt4