PiNSA

21/02/2026

Foundation volunteer Chris Simpson underwent a novel base-editing gene therapy to treat CD40 ligand deficiency, also known as X-linked hyper IgM syndrome, at the National Institutes of Health (NIH).

20/02/2026

Primary Immunodeficiencies (P*s) are typically genetic conditions where the immune system doesn’t function properly from birth 🧬. “Immunocompromised” is a broader term that can describe many situations – temporary or acquired. Understanding the difference helps ensure accurate care and awareness 📢.

16/02/2026

Watch this mini-dcoumentary, The Life Journey with Primary Immunodeficiencies, made by IPOPI. Learn about diagnosis, delays in treatment and challenges that Primary Immunodeficient Patients face.

Primary Immunodeficiencies (PIDs) are a group of rare and often underdiagnosed conditions that affect people from birth through adulthood and beyond.This min...

14/02/2026

13/02/2026

🌟 Our leaflets are now available in Brazilian Portuguese, Polish, Serbian, Hungarian, and many more.

All thanks to the close collaboration with our national member organisations, who help us bring these resources to patients and families worldwide. 🤝

📄 Explore them on our website: www.ipopi.org

04/02/2026

Primary Immunodeficiency (PID) is genetic—we inherit it from our parents.

Did you know? These rare disorders weaken your immune system, making everyday infections a big threat. Symptoms can start in childhood or later in life.

The good news? It's treatable! Options include immunoglobulin replacement therapy (IVIG/SCIG), antibiotics, and emerging gene therapies. Early diagnosis via genetic testing changes lives.

If you suspect PID in a patient or loved one, consult a specialist. Knowledge is power! 💪

02/02/2026

🩸 What happens after you donate plasma?

Once your donation is complete, plasma is collected and your red blood cells and platelets are safely returned to you.

Your plasma is then tested for safety, including screening for transmissible diseases like HIV and hepatitis. To preserve its life-saving properties, it’s frozen shortly after collection - helping ensure it can be safely used when patients need it most.

From there, frozen plasma is delivered to hospitals and healthcare facilities, where it can be thawed and used to support critical treatments.

Every donation follows careful steps to protect donors and patients. 💙Your plasma doesn’t just leave the center - it goes on to save lives.

27/01/2026

Such a wonderful organisation, and like IPOPI, supported PiNSA through the last 25 years of our existence

🌍💙 The Jeffrey Modell Centers Network (JMCN) brings together a worldwide community of experts committed to advancing the diagnosis, treatment, and understanding of Primary Immunodeficiency (PI).

With 930 specialized physicians across 500 academic centers in 345 cities and 93 countries, spanning 6 continents, the JMCN has helped support care for more than 260,000 patients globally.

By connecting clinicians, researchers, and institutions, this network strengthens collaboration, drives innovation, and helps ensure individuals with PI can access expert, comprehensive care—no matter where they live.

📍 Explore the JMCN and find a center near you here: https://bit.ly/3YysapJ

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