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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

Wed, 14 Feb
RareX 2024
Indaba Hotel
register now
14 Feb 2024, 08:00 – 17 Feb 2024, 17:00
Indaba Hotel, William Nicol Drive, Pieter Wenning Road Johannesburg, Fourways, Sandton, 2191, South Africa
The Third Biennial Rare Diseases Conference will take place in Johannesburg from 14-17 Feb 2024. The purpose of the conference is to provide a forum for rare disease patients, doctors and stakeholders to connect & collaborate, and to facilitate an ongoing dialogue on rare diseases & their treatment.
Sat, 24 Feb
Rare Disease Day 2024 — Denim Walk
Walter Sisulu National Botanical Garden
find out more
24 Feb 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.

let our stories inspire you

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November Is Lung Cancer Awareness Month

Did you know that lung cancer is one of the most common types of cancer worldwide? It is also the leading cause of cancer-related deaths...

2 min

Celebrating Liesel…

Today is Phelan-McDermid day and we are celebrating Liesel . 5 year old Liesel was born in Pretoria, with Phelan-McDermid Syndrome, and...

6 min

Switching and Monitoring Best Practice for Gaucher Disease

A consensus document Prepared by: International Working Group on Gaucher Disease (IWGGD) and International Gaucher Alliance (IGA) Issued...

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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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