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...
top of page
blog
Search
Rare Diseases SA
- Oct 13
- 2 min
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...
34 views0 comments
Hlumela Tshijila
- Oct 5
- 6 min
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...
10 views0 comments
Rare Diseases SA
- Oct 4
- 2 min
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...
11 views0 comments
Rare Diseases SA
- Sep 22
- 3 min
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...
3 views0 comments
Rare Diseases SA
- Sep 19
- 4 min
Orchard Therapeutics Announces Acceptance of Biologics License Application for OTL-200 in MLD.
Hope is on the horizon for patients impacted by metachromatic leukodystrophy.
35 views0 comments
Rare Diseases SA
- Sep 6
- 3 min
Intellectual Property in Healthcare: the Patient Perspective
Intellectual Property in healthcare -what does it mean for patients?
20 views0 comments
Rare Diseases SA
- Aug 18
- 1 min
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...
36 views0 comments
Rare Diseases SA
- Aug 18
- 1 min
RDAI - Advancing into Action
The Rare Disease Access Initiative (RDAI), a coalition of key stakeholders that includes participants from health industries and patient...
11 views0 comments
Rare Diseases SA
- Aug 18
- 1 min
#FIGHTFORZACH
August marks exactly a year since Rare Diseases South Africa issued the following press release in respect of our #FigthForZach. Despite...
9 views0 comments
bottom of page