October 20, 2025
The Primary Immunodeficiency Network of South Africa (PiNSA) hosted its first Clinical and Community Summit
This inaugural gathering brought together a diverse group of patients, carers, clinicians, geneticists, medical suppliers, and advocates – meeting face-to-face for the first time. Our panel discussions focused on the critical issues affecting South African PID patients:
- Disease recognition and diagnosis,
- Access to treatment,
- Treatment shortages and systemic gaps
- Collaborative problem-solving to identify practical solutions
This is only the beginning – but it’s a strong step toward building the community, resources, and advocacy that South Africans living with primary immunodeficiencies urgently need.
The passion, expertise, and commitment in the room were unmistakable. Together, we defined concrete actions to help improve outcomes for PID patients.
The Primary Immunodeficiency Network of South Africa (PiNSA) is a volunteer-driven nonprofit that has, for over 25 years, united patients, families, clinicians, and researchers affected by Primary Immunodeficiencies (PID).
We exist to make South Africa a place where immune patients are recognised, diagnosed earlier, and treated fairly. For too long, patients have faced silence, stigma, and systemic gaps in care. PiNSA connects the dots – between hospitals and homes, science and empathy, policy and people.
What we do:
- Build a national patient and caregiver support network
- Work with clinicians, immunologists, and geneticists to improve diagnosis and access to treatment
- Advocate for equitable care through awareness and collaboration
- Share stories and data that help policymakers understand the real-world impact of immune disorders
PiNSA represents South Africa’s primary immunodeficiency community – small in number, powerful in voice, and determined to be seen.
