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Living with Gaucher disease as a toddler in South Africa
Two-year-old Eden Green was admitted to Red Cross Children’s Hospital in July 2020, where she was found to have an enlarged liver and...
Rare Diseases SA
Oct 4, 20232 min read
Call on United Nations Member States to make Universal Health Coverage a Reality for Rare Diseases.
21 September 2023, New York – A high-level meeting at the United Nations Headquarters, UN Member States gathered to accelerate progress...
Rare Diseases SA
Sep 22, 20233 min read
Orchard Therapeutics Announces Acceptance of Biologics License Application for OTL-200 in MLD.
Hope is on the horizon for patients impacted by metachromatic leukodystrophy.
Rare Diseases SA
Sep 19, 20234 min read
Intellectual Property in Healthcare: the Patient Perspective
Intellectual Property in healthcare -what does it mean for patients?
Rare Diseases SA
Sep 6, 20233 min read
Statement of Intent of The Rare Diseases Working Group
The Rare Disease Access Initiative (RDAI), outlined in our Statement of Intent addresses the pressing challenges surrounding rare disease...
Rare Diseases SA
Aug 18, 20231 min read
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
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