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RDAI - Advancing into Action
The Rare Disease Access Initiative (RDAI), a coalition of key stakeholders that includes participants from health industries and patient...
Rare Diseases SA
Aug 18, 20231 min read
#FIGHTFORZACH
August marks exactly a year since Rare Diseases South Africa issued the following press release in respect of our #FigthForZach. Despite...
Rare Diseases SA
Aug 18, 20231 min read
Introducing The South African Rare Diseases Access Initiative
This month our director of research and epidemiology, Dr Helen Malherbe, published yet another correspondence article in the South...
Rare Diseases SA
Aug 18, 20231 min read
The Art Of Confident Verbal Communication
On April 30, 2023, at 6:00 PM CAT, the Neuromuscular Disease Foundation will host a free webinar on the art of confident verbal...
Hlumela Tshijila
Apr 14, 20231 min read
The Brave Fight
A story of hope and healing. “I'm Andi*, an ambassador for a very rare condition called Trimethylaminuria (TMAU or Fish Odour Syndrome)....
Rare Diseases SA
Apr 12, 20233 min read
CMS Member Awareness Survey 2023
The Council for Medical Schemes (CMS) is conducting a survey to assess member awareness. The survey questionnaire has been designed to...
Hlumela Tshijila
Mar 7, 20231 min read
Another SA-first, as Vodacom launches a National Relay Service (NRS) to drive digital inclusion for
A milestone towards digital inclusion has been achieved as Vodacom announces another first in South Africa, with the launch of a...
Hlumela Tshijila
Nov 22, 20223 min read
Patient Profiles: Wrongful Diagnosis
Having been misdiagnosed, I would have never imagined how life with Pompe would turn out. My name is Michelle Marais and I am a Pompe...
Rare Diseases SA
Oct 21, 20227 min read
Dad Diaries: Life with A Rare Disease Is Anything but Normal
As a dad, it was my absolute honour and privilege to be able to give my daughter one of my kidneys on June 22, 2021. This was exactly...
Rare Diseases SA
Oct 21, 20224 min read
Experimental cancer drug could be effective in treating idiopathic pulmonary fibrosis
Researchers have shown that the medication saracatinib shows promise as a treatment for idiopathic pulmonary fibrosis (IPF). Saracatinib...
Rare Diseases SA
Oct 17, 20222 min read
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