IPSPI - Indian Patients Society for Primary Immunodeficiency

01/05/2026

That's great news.....

CRISPR-based modification of haematopoietic stem cells has enabled durable, boostable antibody production in mouse models offering a programmable platform for treatment across infectious, genetic a...

01/05/2026

01/05/2026

✨As World PI Week 2026 comes to a close, we want to extend our heartfelt thanks to every single person who made this year’s campaign so meaningful.

To the patients and families who shared your lived experiences with honesty and courage…

To the healthcare professionals working tirelessly to improve diagnosis, treatment, and support…

To the advocates and community organizations who keep awareness growing year-round…

To the policymakers and partners driving systems level change…

And to our global community who joined us in saying loud and clear: We Can’t Wait for change.

Thank you for standing with us, sharing our materials, amplifying our message, and helping to build a future where everyone with a Primary Immunodeficiency feels seen and supported.

29/04/2026

Your immune system is more than a defender; it is a superhero that knows how to balance protection and control.

⚖️ That balance is key to your health and well-being.

Let’s raise awareness together! 🌍📣

👉 Learn more: https://lnkd.in/d7NDnUPU

29/04/2026

WPIW 2026: IPSPI in collaboration with AMSA INDIA and Butterfly organised Free General Health Checkup Camp and Awareness on IEI for Children and Parents in South Delhi on 26th April,2026.

29/04/2026

29/04/2026

Today, we celebrate World Immunology Day – a moment to recognize the science, innovation, and collaboration that drive better understanding, earlier diagnosis, and improved care for people living with Primary Immunodeficiencies.

Immunology plays a vital role in uncovering the hidden complexities of Primary Immunodeficiencies, helping healthcare professionals identify warning signs sooner and develop life-changing treatments that strengthen and support the immune system.

Thanks to the dedication of researchers, clinicians, and advocates around the world, progress continues every day.

28/04/2026

WPIW 2026: IPSPI in collaboration with AMSA INDIA organised a Walkathon at CP Inner Circle, Connaught Place,New Delhi on 25th April,2026.IPSPI distributed pamphlets on 10 Warning signs of PID . Certificates of participation, T.shirts, Medals,Bags, Diary and Pen and Refreshments were given to all Participants.Professor Dr. LH Ghotekar,Medical Superintendent, LHMC,New Delhi was Guest of Honour of the event.

25/04/2026

This World PI Week we are emphasising the extent of the issue of slow diagnosis, 54% of immunodeficiency patients we surveyed attended 10 or more appointments with a healthcare professional for their symptoms, with 14% attending 50 or more appointments before their immunodeficiency was diagnosed.

This is not OK. Delays in diagnosis take a significant toll on people’s physical and mental health and seriously impacts their quality of life.

As one patient said:

‘Not being diagnosed until I was 60 was a problem. I was always told the infections were just one of those things no one understood.’

Our report also showed that 55% of respondents had been admitted to hospital before their confirmed diagnosis. Of those who responded, 14% were admitted at least 10 times while 5% were admitted at least 20 times.

https://www.immunodeficiencyuk.org/wp-content/uploads/2025/08/Patient-Experience-Report-Misunderstood-and-underserved.pdf

25/04/2026

“Hi, I'm Leah. I have activated PI3K delta syndrome 2 (APDS 2), which is a very rare primary immunodeficiency disorder caused by mutations in the PI3KR1 gene. I was diagnosed at 19 years of age, but I've lived with symptoms since I was 2 years old.”

From early childhood, Leah faced repeated chest and ear infections, persistent eye problems, and an immune system that couldn’t make the antibodies she needed to fight illness. Over time, her left lung became badly damaged and barely functional, and she depended on weekly immunoglobulin injections.

Her diagnosis came through a clinical study, but just one week later, she was told she had stage 4 non-Hodgkin lymphoma. After chemotherapy and a stem cell transplant, Leah’s life was transformed. She’s now in remission and doesn’t need regular immune therapy

💬 “Getting a diagnosis for APDS ultimately saved my life.”

Leah still lives with long-term effects like breathlessness and pain — reminders of years without answers.

👉 This World PI Week, let’s remember: waiting causes harm. Early diagnosis changes lives. Read Leah’s story https://www.immunodeficiencyuk.org/immunodeficiency/patient-stories/stories-of-adults-with-pids/living-with-activated-pi3k-delta-syndrome-2-apds-2/

22/04/2026

IPSPI strongly advocates for early diagnosis and timely treatment and support for Primary Immunodeficiencies- It cannot wait