

Knowing Your CODE: Why ICD Codes Matter More Than You Think
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
4 min read


Three Million Reasons South Africa Needs a Rare Disease Policy
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
5 min read


Around the Globe in 19 Days
This is Nicole's travelling experience, attending the 5th International Scientific Congress on Spinal Muscular Atrophy (SMA) in Budapest
4 min read



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