PiNSA

29/04/2026

28/04/2026

📢 This World PID Month, we're calling on healthcare professionals, policymakers, and advocates to act.
Primary Immunodeficiency affects millions worldwide — yet diagnosis is often delayed by years. Without timely treatment, PI patients face life-threatening complications that could be prevented.
The message is simple: PI patients cannot wait any longer.
✅ Learn the signs ✅ Champion early testing ✅ Advocate for access to treatment
Join the conversation this World PID Week and help make change happen. 💙

24/04/2026

Every person living with a Primary Immunodeficiency deserves more than awareness. They deserve a clear diagnosis, access to care, and a future defined not by their condition, but by their potential.

Let’s close the gap between knowing and doing. Let’s turn powerful stories into policy, compassion into clinical confidence, and insight into impact.

Let's arm our changemakers with the tools they need to build a better future.

23/04/2026

Imagine being sick for years… and no one can tell you why.

For many people living with Primary Immunodeficiency, diagnosis doesn’t come quickly.
It takes years. Sometimes decades.

• Repeat infections
• Endless doctor visits
• No clear answers

That delay isn’t just frustrating. It’s dangerous.

This World PID Week, we’re calling it out.

Faster diagnosis matters.
Access to treatment matters.
Listening to patients matters.

Because waiting has a cost. And patients have already waited long enough.

Watch and share: https://youtu.be/usWZzNt1LXc

Who in your world needs to understand this better?

World PI Week Video: We Can Transform Lives, Together

22/04/2026

An estimated 6 million people worldwide are living with Primary
Immunodeficiencies, yet up to 90% remain undiagnosed, and the average
two-year diagnostic delay leaves many trapped in uncertainty and preventable ill health, despite the fact that effective treatments exist.

We Can’t Wait for earlier diagnosis, timely access to treatment and the policy changes needed to make care accessible for all. By recognizing
warning signs sooner, strengthening referral pathways, improving reimbursement systems and aligning national frameworks with national
essential lists, we can close the gap between knowing and doing. When systems work, lives change, and no one should be left waiting for the care they need.

20/04/2026

It is Primary Immunodeficiency Awareness month.
Primary Immunodeficient patients cannot wait to be diagnosed.
Early diagnosis and treatment is imperative - it saves lives!

13/04/2026

Spotting Primary Immunodeficiency early can change everything. Patients with infections that are severe, persistent, unusual, or resistant should be screened so they can get the right care sooner.

10/04/2026

We’re excited to introduce a meaningful new children’s book from the Immune Deficiencies Foundation Australia, created to inspire, educate, and empower young readers.

What Does Brave Feel Like?
Judy Garner and Javeria Khan

Get ready for an exciting journey with this beautifully developed story! Perfect for primary-aged kids, it teaches health, resilience, and the lives of those with immunodeficiency.

Follow Ebony and Ismaeel for an honest look at what hospital days can be like for children receiving immunoglobulin infusions. Along the way, they discover friendship, understanding and the quiet strength that comes from knowing they are not alone.

This book is part of IDFA’s broader mission to provide accessible resources and improve the quality of life for those affected by rare immune conditions. By sharing stories like these, we can help children feel seen, supported, and empowered.

Whether you're a parent, educator, healthcare professional, or simply passionate about children’s wellbeing, this book is a valuable addition to your collection.

Together, we can raise awareness, foster compassion, and support the next generation through the power of storytelling.

Purchase Book: https://www.idfa.org.au/idfa-products/idfa-childrens-book/

10/04/2026

This April, we shine a light on Primary Immunodeficiency. With over 550 genetic conditions that weaken the immune system, awareness can lead to faster diagnosis and better support. Join the movement and help make invisible challenges visible.

08/04/2026

🚨 Mark Your Calendar! 🚨

Join us on April 28, 2026 at 9 AM PDT / 12 PM EDT for our next JMF Speaker Series, held in recognition of World Primary Immunodeficiency Week (April 22–29) 💙

We’re honored to welcome Dr. Luigi D. Notarangelo, Chief of the Immune Deficiency Genetics Section at National Institute of Allergy and Infectious Diseases, for a virtual presentation:
“Primary Immunodeficiencies: A Continuously Evolving Story”

Moderated by Dr. Lisa Forbes Satter, this session will explore the ever-evolving landscape of PI research, diagnosis, and care.

✅ Registration is FREE here: https://info4pi.org/wjmf/speaker-series/

This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of The Columbia University Vagelos College of Physicians and Surgeons and the Jeffrey Modell Foundation.

02/04/2026

Wishing you a blessed Easter filled with precious moments! Share your celebrations below. 💕

25/03/2026

🤧 Flu season can be especially challenging for those of us living with Primary Immunodeficiency (PID).
Taking the right precautions isn't just helpful — it's essential. 💙
Watch our latest video for practical tips on how to protect yourself this flu season, including:
🧼 Hand hygiene best practices
😷 How to reduce your exposure risk
Your health matters. Share this with a fellow PID warrior or caregiver who could benefit. 💛