PiNSA

20/01/2026

A new year does not fix broken systems.
People do.

In 2026, PiNSA is focused on what actually shifts the dial:
• Clearer care pathways
• Faster recognition of PID
• Stronger coordination between families, clinicians, and funders

Less noise. More progress.

If you are part of this community, as a parent, patient, clinician or advocate, this work is for you.

And it only moves when we move it.

07/01/2026

📝 Our latest educational leaflet is now available!

A tool to connect patients, families, and healthcare professionals and foster a stronger PID community.

Get it here: http://ipopi.org/publications/leaflets

31/12/2025

PiNSA has been supporting families and patients with primary immunodeficiency for 25 years! Here is to the next 25 years and beyond!
Happy new year!

30/12/2025

29/12/2025

Fact check ✔️

MYTH: Primary Immunodeficiency only affects children.

FACT: While some severe forms of PI become apparent in infancy, approximately 75% of diagnoses are made in adults.

📌 Primary Immunodeficiency doesn’t discriminate - all ages can become affected.

Let’s break the myths and share the facts. 💛 Stay tuned for more in our new Myth vs. Fact series!

20/12/2025

We are rapidly nearing the end of 2025!
Give a shoutout to your medical team and treating hospitals! Let's show our heroes in capes some love! 🦸‍♀️🦸‍♂️

19/12/2025

✨Our NMO Webchat community came together for an inspiring and forward-looking discussion on the future of World PI Week, with 44 participants from 30 countries joining the exchange.

💬 Highlights from the session included:

- Engaging discussions led by Otilia Stanga and Miriam Ferreira, members of the World PI Week Steering Committee, on “Where We’re Going Together: World PI Week 2026”;
- A strong focus on exchanging ideas, building actions, and strengthening collaboration across NMOs;
- Updates on upcoming NMO programmes and next steps for World PI Week.

🌍 World PI Week (22–29 April) is a key global campaign raising awareness of Primary Immunodeficiencies (PIDs), promoting early diagnosis, improving access to care, and increasing visibility for the PID community worldwide.

🙏 Thank you to all NMOs who joined, shared perspectives, and helped shape the future of World PI Week. Let’s keep the momentum going - together.

13/12/2025

It is end of the year and we are rapidly approaching Christmas🎄
How do you fill your cup so that you can pour from it again? 💝
Please share some of your tips with our PiNSA community.

09/12/2025

08/12/2025

🎄✨ Stay Safe & Celebrate This Festive Season! ✨🎄
The holidays are here, and we want ALL our community members to enjoy the festivities!
For those living with primary immunodeficiency, celebrating doesn't mean compromising on safety. Our latest video shares essential tips to help you embrace the festive spirit while protecting your health:
✋ Keep germs at bay with good hygiene practices
🍽️ Make smart food and drink choices
💊 Stay on top of your medications and health needs
👥 Choose your festive activities wisely
Remember: You CAN celebrate with peace of mind by taking a few simple precautions!
Watch our video and share these tips with someone who might benefit from them. Together, we can ensure everyone has a joyful and SAFE festive season! 💗

07/12/2025

As a mother and as an advocate, I have first-hand experience of the current system and its barriers. When my child was diagnosed, I ran this gauntlet myself. Today I stand with families who face the same maze. I see how archaic the process is. I see how patient voices are pushed to the edges. I see....

27/11/2025

We are quickly nearing the end of 2025. What are your goals for 2026 and beyond?