This year, IDFA’s Rare Disease Day campaign brought together schools, families, advocates, and communities across the country to help raise awareness of primary immunodeficiencies (PI) and the experiences of those living with rare diseases. At the heart of the...
When baby Eva was just four months old, her mum Alice and dad Dan noticed something wasn’t right. What began as simple formula feeding quickly turned into months of unexplained symptoms. By five to six months, Eva was experiencing persistent diarrhoea, yet every stool...
For Alison, caring is not just something she does—it’s who she is. As a mother to two teenage daughters living with Common Variable Immunodeficiency (CVID), her life is stitched together with illness, resilience, and a deep love for her husband and daughters. Her...
In the quiet spaces between nursing shifts, therapy appointments, and medical paperwork, one mother quietly carries the weight of caring for her young son, who lives with hypogammaglobulinemia—a primary immunodeficiency that has shaped much of his early life and hers....
Michelle has built a life filled with creativity, resilience, and a steadfast commitment to raising awareness about her health condition, Common Variable Immunodeficiency (CVID). Now 64 years old, she was diagnosed at 57. Michelle’s journey has not been easy,...
