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
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Hlumela Tshijila
May 223 min read
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...
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Hlumela Tshijila
Jan 242 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...
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Rare Diseases SA
Sep 22, 20233 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...
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Rare Diseases SA
Sep 19, 20234 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.
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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...
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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...
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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...
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Rare Diseases SA
Oct 17, 20222 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...
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Rare Diseases SA
Aug 26, 20221 min read
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...
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Rare Diseases SA
Aug 22, 20223 min read
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...
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Rare Diseases SA
Sep 7, 20215 min read
RECOGNISING RARE DISEASES – ACCESS AND ACTION
Mobilising stakeholders towards the formulation and eventual adoption of effective rare disease policy to transform patients' lives. The...
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Rare Diseases SA
Jun 25, 20212 min read
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
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Rare Diseases SA
Mar 31, 20213 min read
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...
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Rare Diseases SA
Mar 9, 20213 min read
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...
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Rare Diseases SA
Dec 15, 20203 min read
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.
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Rare Diseases SA
Dec 12, 20202 min read
Universal Health Care in South Africa - what do we need to strive for?
In September 2019, Member States of the United Nations, including South Africa, signed the most comprehensive and ambitious declaration...
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Rare Diseases SA
Feb 5, 20204 min read
Advocacy – what is that?
WHAT IS ADVOCACY? Whilst we are spending the month of Feb re-framing what the world thinks about Rare, we thought we spend just one day...
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Rare Diseases SA
Aug 14, 20191 min read
Rare Diseases SA responds to signing of Presidential Health Compact 25 July 2019 – Pretoria
Rare Diseases South Africa (RDSA) has released the statement below in response to the signing of the Presidential Health Compact and in...
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Rare Diseases SA
Aug 14, 20191 min read
Girl with Rare Condition makes Teddy Bears to hide IV Bags for Paediatric patients
A 12-year-old American girl has come up with an ingenious product to ease the anxieties of paediatric patients just like her. Ella Casano...
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