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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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part of our

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.


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.

upcoming events

  • 21 Aug 2024, 19:00 – 20:00
    Join our webinar to unravel the complexities of your medical aid! Learn strategies to prevent flare-ups and maximize your benefits with expert guidance. Don’t let confusion compromise your care—master your medical aid and stay healthy! Secure Your Spot Now! Transform how you handle your health cove
  • 24 Sept 2024, 18:00 – 20:00
    Walter Sisulu National Botanical Garden, Malcolm Rd, Poortview, Roodepoort, 1724, South Africa
    Denim Walk – a fun-for-all, evening walk through the beautiful Walter Sisulu National Botanical Gardens. Come and #ShareYourColour with our RARE community, your friends and your family. And please, be sure to wear jeans and an old white shirt as we have some colourful play planned.
  • 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.
  • Date and time is TBD
    Awareness Days
    Williams Syndrome Awareness Month is observed annually in May to raise awareness about Williams syndrome, a rare genetic condition characterised by developmental delays, unique facial features, and cardiovascular issues.

let our stories inspire you


our corporate members

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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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