For the past 10 years, I have been living with Trigeminal Neuralgia, a rare and often misunderstood neurological disease . It is a condition that has changed my life in ways words sometimes struggle to explain. The pain is sudden, intense, and unpredictable — like electric shocks to my face. Simple everyday activities such as talking, eating, brushing my teeth, smiling, or even feeling a light breeze can trigger unbearable pain. What others do without thinking can feel like a

My name is Ilze, and I was born with a rare heart condition . My parents lost my older sister at just 3 days old to the same disease. Two years later, I arrived with the same condition—but thanks to improved medical technology, I am here today at 51. Ilze In the early 2010s, I started struggling to lift my arms and even swallow. I saw so many doctors and went through countless tests that I eventually gave up on finding a diagnosis. One day I visited my GP for what I thought

In March of this year, our family received a diagnosis that changed our lives — Pitt Hopkins Syndrome. As we navigate this new reality,...

Johannesburg, South Africa – 17 September 2025 – The bustle of Charlotte Maxeke Johannesburg Academic Hospital looks a little different...

Supplied: Chloe Davies, Age 24 I was diagnosed with Ehlers-Danlos Syndrome (EDS) just last year — but my symptoms started when I was only...

18 April 2025 - Johannesburg. Rare Diseases South Africa (RDSA) is excited to share some important updates regarding South Africa's...

Rare Diseases South Africa NPC (RDSA) has issued correspondence to the Honourable Minister of Health, with regards to the WHA Resolution