18 April 2025 - Johannesburg. Rare Diseases South Africa (RDSA) is excited to share some important updates regarding South Africa's...

Living with Epidermolysis Bullosa (EB) is a daily battle. Often referred to as “butterfly skin” disease , EB is a rare genetic disorder...

07 Feb 2025 - Johannesburg It is with profound sadness and deep respect that we gather our thoughts to honor the remarkable life and...

7 February 2025 - Johannesburg Rare Diseases South Africa NPC (RDSA) announces the departure of Dr Helen Malherbe from her role as a...

Rare Diseases South Africa NPC (RDSA) has issued correspondence to the Honourable Minister of Health, with regards to the WHA Resolution

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...

The Council for Medical Schemes (CMS) seeks to provide clarity regarding the funding of Iron Deficiency Anaemia as a Prescribed Minimum...

21 September 2023, New York – A high-level meeting at the United Nations Headquarters, UN Member States gathered to accelerate progress...

Hope is on the horizon for patients impacted by metachromatic leukodystrophy.

The Rare Disease Access Initiative (RDAI), a coalition of key stakeholders that includes participants from health industries and patient...

August marks exactly a year since Rare Diseases South Africa issued the following press release in respect of our #FigthForZach. Despite...

This month our director of research and epidemiology, Dr Helen Malherbe, published yet another correspondence article in the South...

Researchers have shown that the medication saracatinib shows promise as a treatment for idiopathic pulmonary fibrosis (IPF). Saracatinib...

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 South Africa (RDSA) has been inundated with calls over the weekend from panicked members of Health Squared Medical Scheme...

Mobilising stakeholders towards the formulation and eventual adoption of effective rare disease policy to transform patients' lives. The...

25 June is World Vitiligo Day. This rare, progressive, auto-immune condition can affect anyone, at any age and whilst research is continuing

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...

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...

South Africa’s GDP allocation to healthcare research is under 0.3% - a far cry from where it should be.