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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
THE ONLY BOY IN AFRICA
Imagine every few days remembering something so deep that it scares you like it's the first time you found out... Dear boy, When I was twelve weeks pregnant with you, the doctors could not find your nasal bone during a scan. They recommended a NIPT test to check for Down syndrome and other genetic conditions. On that same day, we also received the envelope that held the secret of your gender. My blood was drawn, and the sample was flown to the United Kingdom. Then we waited.
4 min read
