Written by Kelly du Plessis, CEO, Rare Diseases South Africa For every person living with a rare disease, diagnosis is rarely a single moment. It is a journey, often years long, through misdiagnoses, dead ends, and a healthcare system that was not designed with rare conditions in mind. We call it the diagnostic odyssey, and it is one of the areas where I have spent much of my advocacy career trying to make a difference. That is why I was honoured to serve on the expert panel

By Kelly du Plessis, CEO, Rare Diseases South Africa If you live with a rare disease, or care for someone who does, you have probably had this experience: a claim comes back unpaid, a benefit is paid from the wrong pool, or a life-saving treatment suddenly needs authorisation you didn't know was required. Nine times out of ten, the explanation traces back to three or four characters on a form that most patients never learn to read: the ICD code. It sounds like small print. It

By Kelly du Plessis, Founder & CEO, Rare Diseases South Africa For thirteen years, I have watched South African families walk the same lonely road: a child who isn't developing quite right, a specialist out of ideas, a referral letter that goes nowhere, years, sometimes a decade, before anyone can put a name to what's wrong. We at Rare Diseases South Africa (RDSA) have always known this journey is common. What we haven't had, until now, is a number. We have one now. And it's