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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.

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upcoming events

let our stories inspire you

5 min read

Breaking Down Barriers: Creating a More Inclusive World for All

This opinion piece is informed by my personal experiences and poignant life story. My name is Ian Adams, and I have Retinitis Pigmentosa...

5 min read

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 read

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...

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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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for a better tomorrow