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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.

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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.

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upcoming events

let our stories inspire you

MEDIHELP FOUND IN CONTEMPT OF COURT AS JUDGE’S RULING UPHOLDS 6 YEAR OLD ZACH’S RIGHT TO CARE.

Pretoria, 31 October 2025 ~ The de Wet family and Rare Diseases South Africa (RDSA) welcome today’s High Court judgement delivered by Swanepoel J in the Gauteng Division, Pretoria, which declares Medihelp Medical Scheme in contempt of court and compels immediate compliance with an earlier order to fund prescribed minimum benefit (PMB) care for four-year-old Zachary de Wet, who lives with Hunter’s syndrome (MPS II). This ruling follows years of litigation, during which the Co

4 min read

Mandela Day 2025: Imagination Stations Bring Hope to Witkoppen Clinic

SA) set out to honour Madiba’s enduring belief in the power of education by launching a heartfelt initiative: Imagination Stations

2 min read

Raising Awareness for Pitt Hopkins Syndrome: A Journey with My 6-Year-Old Daughter

In March of this year, our family received a diagnosis that changed our lives — Pitt Hopkins Syndrome. As we navigate this new reality,...

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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