22 - 25 April 2025
About Primary Immunodeficiencies
Primary Immunodeficiencies are a group of over 550 conditions where part of the body’s immune system is missing, does not function correctly or at all. These conditions leave individuals more vulnerable to infections, autoimmunity, and other complications. While some forms of Primary Immunodeficiencies are identified early in life, others manifest in childhood, adolescence, or adulthood, often after years of unexplained health struggles.
Over 550 forms exist, affecting people of all ages.
● Approximately 6 million people worldwide live with Primary Immunodeficiencies, yet 70-90% remain undiagnosed.
● Not contagious – these conditions are mostly genetic, meaning they are inherited, though some cases arise spontaneously.
● Frequent infections could indicate an underlying
immune disorder.
● Timely diagnosis reduces hospitalizations, long-term complications, and improves quality of life.
● Treatment options vary and may include anti-infectious treatments, immunoglobulin therapy, targeted therapies, bone marrow transplant or gene therapy.
● Quality of life – with timely diagnosis and proper treatment, many can lead productive, fulfilling lives
A diagnosis transforms lives, enabling treatment and self-management.
Without a diagnosis:
● Infants with severe Primary Immunodeficiency may not survive past early childhood without extreme protective measures.
● Children may experience frequent illnesses, affecting education, social development, and overall quality of life.
● Adults may suffer from chronic infections and other manifestations that impact careers, family life, and mental health
We are calling for collaborative efforts from the general public, healthcare professionals, policymakers and the Primary Immunodeficiency community.
To join the conversation, share the facts, stay informed and advocate for support. So that we can drive earlier diagnosis, effective treatment plans and ultimately, save lives.
Together, we must raise awareness, educate, and uncover the true stories behind Primary Immunodeficiencies.
