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#1in15 South Africans are affected by rare diseases

That's the equivalent of 1 player in every rugby team!

Whilst uniquely they may be rare, with more than 7000 known rare diseases, collectively they are more common than anticipated.

At Rare Diseases South Africa, we’re doing our best to support those 4.1 million South Africans who have been, or will be, diagnosed with a rare disease or congenital disorder in their lifetime.

Our mission is to ensure a better tomorrow for all those impacted.

the lives

we touch

Rare Diseases South Africa is a registered non-profit organisation (NPO 120-991) advocating for a better tomorrow for the #1in15 South Africans impacted by rare diseases and congenital disorders, including greater recognition, support, improved health service and better overall quality of life.

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Whether you're a patient, carer, family member, healthcare professional or even an athlete willing to use your mobility for the benefit of those without your voice counts and your input matters.

Get involved and help us to leave a legacy... a better tomorrow.

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giving is
good medicine

Support Rare Diseases SA, in any way you are able to, and invest in a better tomorrow for the 1 in 15 South Africans that are, or who will be, impacted by a rare disease or congenital disorder at some point in their lives.

Rare Diseases South Africa is a registered Non-Profit Organisation (NPO 120-991) and relies on donations and contributions from the public to enable us to continue our work in advocacy and research.

Back the team who supports the #1in15.

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upcoming events

Sat, 21 Sept
Usher Syndrome Awareness Day
Awareness Days
find out more
21 Sept 2024, 00:00 – 23:50
Awareness Days
Usher Syndrome Awareness Day is observed on the third Saturday of September and falls on September 21 this year. This rare genetic disease has long gone unrecognized, but many are working hard to bring it to light. Usher syndrome affects eyesight, hearing, and mobility
Wed, 25 Sept
World Lung Day
Awareness Days
find out more
25 Sept 2024, 00:00 – 23:50
Awareness Days
The respiratory conditions have a significant societal and economic cost, with the burden negatively affecting healthcare systems, impacting the lives of patients and their families, lowering productivity, and widening the gap in life expectancy between the poorest and wealthiest. A significant prop
Sun, 29 Sept
World Heart Day
Awareness Days
find out more
29 Sept 2024, 00:00 – 23:50
Awareness Days
Every year, over 17 million people die from heart disease. As a way to fight this, the World Heart Federation created World Heart Day. It’s an event held every year on September 29.
Tue, 01 Oct
National Inherited Disorders Day
Awareness Days
find out more
01 Oct 2024, 00:00 – 23:50
Awareness Days
Inherited disorders according to the head of Science Retina South Africa, Claudette Medefindt cover a huge diversity of diseases that affect millions worldwide. “They can cause serious health issues. Genetic components have been implicated in cancer, heart disease, Diabetes, mental health and blin
Sun, 17 Nov
947 Ride Joburg - 2024
Johannesburg
register now
17 Nov 2024, 05:00 – 17:00
Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Sunday 17 November 2024, FNB Stadium, Johannesburg.

let our stories inspire you

5 min

The Cost of a Life: A Family's Fight for Their Son's Future Amid Medical Scheme Dispute—Raising Awareness for SMA

Johannesburg, South Africa – August 2024 – Spinal Muscular Atrophy (SMA) is a rare and devastating genetic disorder that affects the...

3 min

Great.com interviews Rare Diseases South Africa About Shinning Light on All Things Rare

Danielle Ribeiro from Great.com interviewed Rare Diseases South Africa (RDSA) as part of their 'Great.com Talks With...' podcast. This...

4 min

Update on the #FightForZach

It’s been 2 years since Rare Diseases South Africa (RDSA) launched a case in the Pretoria High Court on behalf of Zachary de Wet, at that...

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RDSA will be reimplementing our monthly newsletters to update you on our work and the progress we're making within the rare disease and congenital disorder landscape in South Africa.

We have four newsletter which will contain unique information based on our four pillars: Community Engagement, Advocacy, Patient Navigation and Research.

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