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

Bruce Campbell: The Rare Warrior Who Refuses to Stop At Rare Diseases South Africa , we celebrate resilience, courage, and community, values personified by Bruce Campbell , a true Rare Warrior whose journey inspires both the rare disease community and the sporting world. A Life of Resilience Bruce’s battle with rare disease began at six years old when he was diagnosed with Guillain-Barré Syndrome , leaving him paralysed and on a ventilator. Against the odds, he learned to wal