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Unified Effort: South Africa's Commitment to Disability Inclusion
18 April 2025 - Johannesburg. Rare Diseases South Africa (RDSA) is excited to share some important updates regarding South Africa's...

Rare Diseases SA
Apr 183 min read
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Running for Awareness, a Sister’s Fight Against a Rare and Painful Disease
Living with Epidermolysis Bullosa (EB) is a daily battle. Often referred to as “butterfly skin” disease , EB is a rare genetic disorder...

Rare Diseases SA
Apr 43 min read
184 views
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In Memory of Dr Mehnaaz Ally
07 Feb 2025 - Johannesburg It is with profound sadness and deep respect that we gather our thoughts to honor the remarkable life and...

Rare Diseases SA
Feb 72 min read
961 views
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Dr. Helen Malherbe Steps Down as Director of Rare Diseases South Africa NPC
7 February 2025 - Johannesburg Rare Diseases South Africa NPC (RDSA) announces the departure of Dr Helen Malherbe from her role as a...

Rare Diseases SA
Feb 72 min read
196 views
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Request to Minister of Health regarding WHA Resolution on Rare Diseases
Rare Diseases South Africa NPC (RDSA) has issued correspondence to the Honourable Minister of Health, with regards to the WHA Resolution

Rare Diseases SA
Aug 8, 20243 min read
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Get The Flu Vaccine Ahead Of The Influenza Season
As the seasons change, so does the risk of getting sick. With the influenza season on the horizon, it is time to think about protecting...

Hlumela Tshijila
May 22, 20243 min read
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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
101 views
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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
25 views
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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
51 views
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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
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#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
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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
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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
57 views
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High Court Judgement in the Matter De Wet and RDSA vs MediHelp and CMS
The matter of Zachary de Wet was heard on Tuesday, 23 August, in an urgent application in the Pretoria High Court. The application made...

Rare Diseases SA
Aug 26, 20221 min read
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Health Squared: What Now?
Rare Diseases South Africa (RDSA) has been inundated with calls over the weekend from panicked members of Health Squared Medical Scheme...

Rare Diseases SA
Aug 22, 20223 min read
555 views
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RECOGNISING RARE DISEASES – ACCESS AND ACTION
Mobilising stakeholders towards the formulation and eventual adoption of effective rare disease policy to transform patients' lives. The...

Rare Diseases SA
Sep 7, 20215 min read
646 views
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Understanding Vitiligo
25 June is World Vitiligo Day. This rare, progressive, auto-immune condition can affect anyone, at any age and whilst research is continuing

Rare Diseases SA
Jun 25, 20212 min read
115 views
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Burden of Rare Diseases in the USA almost $1 Trillion in 2019
The total economic burden for Rare Diseases in the United States of America for 2019 came to almost $1 Trillion! That is according to the...

Rare Diseases SA
Mar 31, 20213 min read
65 views
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Invisible Value Syndrome
It sounds a lot like a rare disease… but it’s neither a disease, nor is it rare. It’s an unfortunate mentality that exists surrounding...

Rare Diseases SA
Mar 9, 20213 min read
183 views
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Healthcare Funding and Resources – SA’s ‘Other’ Pandemic
South Africa’s GDP allocation to healthcare research is under 0.3% - a far cry from where it should be.

Rare Diseases SA
Dec 15, 20203 min read
64 views
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