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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 4.2 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 Jun
Rett X Conference – Johannesburg
Eagles Nest
register now
21 Jun 2025, 08:00 – 18:00
Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.
Sat, 08 Nov
947 Ride Joburg - Kids Races 2025
Johannesburg
register now
08 Nov 2025, 05:00 – 12:00
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. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
Sat, 08 Nov
947 Ride Joburg - Mountain Bike Races 2025
Johannesburg
register now
08 Nov 2025, 05:00 – 09 Nov 2025, 12:00
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. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
Sun, 16 Nov
947 Ride Joburg - Road Races 2025
Johannesburg
register now
16 Nov 2025, 05:00 – 12:00
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 16 November 2025, FNB Stadium, Johannesburg.

let our stories inspire you

20 Years in the Dark: My Journey to an Ehlers-Danlos Syndrome Diagnosis

Supplied: Chloe Davies, Age 24 I was diagnosed with Ehlers-Danlos Syndrome (EDS) just last year — but my symptoms started when I was only...

2 min read

Adoption of Resolution for Rare Diseases has been passed at WHA78 in Geneva

BREAKING NEWS FROM GENEVA! The Resolution on Rare Diseases has officially been adopted at the 78th World Health Assembly (WHA78)! This is...

1 min read

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...

3 min read

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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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