This Mother’s Day, Rare Diseases South Africa honours the caregivers whose persistence, instinct, and advocacy change outcomes — not only for their own children, but for the rare disease community as a whole. Hunter and Olivia’s story is one of those stories. When Rare Disease Becomes Personal Many families affected by rare diseases begin their journey believing, “This won’t happen to us. "Hunter and Olivia’s parents were no different. They were a healthy family. Rare disease

In South Africa, being rare often means being unseen. Baby Sacha For five months, Sacha Ariel was simply a baby being loved. Born a healthy 2.7kg, he thrived in those early weeks, surrounded by warmth, laughter, and the deep bond forming between him and his big brother. Like so many families, Sacha’s parents were living the joy of newborn life — unaware that a rare diagnosis would soon change everything. When Sacha became ill and was admitted to hospital for dehydration and p

Kyle Small’s Story and Why Haemophilia Awareness Matters Haemophilia is often misunderstood. Many people believe it means bleeding excessively from small cuts, when in reality, the most serious danger lies beneath the surface. Haemophilia is a hereditary blood disorder passed from mother to child, where the blood does not clot properly. People with haemophilia do not bleed faster than others, but they bleed for much longer, and internal bleeding, especially into joints, muscl