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HELP RAISE AWARENESS FOR VASCULAR MALFORMATIONS!
Remei was born a year ago with what initially looked like what the paediatrician described as “severe port wine stains”. As the...

Hlumela Tshijila
Feb 23, 20241 min read
Circular 1 of 2024: Iron Deficiency Anaemia as a PMB condition
The Council for Medical Schemes (CMS) seeks to provide clarity regarding the funding of Iron Deficiency Anaemia as a Prescribed Minimum...

Hlumela Tshijila
Jan 24, 20242 min read


November Is Lung Cancer Awareness Month
Did you know that lung cancer is one of the most common types of cancer worldwide? It is also the leading cause of cancer-related deaths...

Hlumela Tshijila
Nov 8, 20231 min read


Celebrating Liesel…
Today is Phelan-McDermid day and we are celebrating Liesel . 5 year old Liesel was born in Pretoria, with Phelan-McDermid Syndrome, and...

Rare Diseases SA
Oct 13, 20232 min read


Switching and Monitoring Best Practice for Gaucher Disease
A consensus document Prepared by: International Working Group on Gaucher Disease (IWGGD) and International Gaucher Alliance (IGA) Issued...

Hlumela Tshijila
Oct 5, 20236 min read


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
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