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Are you a patient needing assistance? Reach out via hello@rarediseases.co.za

for a

better 

tomorrow

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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.

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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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community

become

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.

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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.

upcoming events

  • World Prematurity Day
    World Prematurity Day
    Mon, 17 Nov
    Online Platforms
    17 Nov 2025, 00:00 – 23:50
    Online Platforms
    This year’s theme echoes WHO’s Healthy beginnings, hopeful futures campaign. It reminds us that every child deserves a fair chance at life, starting from their very first moments.
  • International Men's Day
    International Men's Day
    Wed, 19 Nov
    Online Platforms
    19 Nov 2025, 00:00 – 23:50
    Online Platforms
    International Men’s Day celebrates worldwide the positive value men bring to the world, their families and communities. We highlight positive role models and raise awareness of men’s well-being. Our theme for 2025 is “Celebrating Men and Boys”.
  • World COPD Day
    World COPD Day
    Wed, 19 Nov
    Online Platforms
    19 Nov 2025, 00:00 – 23:50
    Online Platforms
    World COPD Day is organized by the Global Initiative for Chronic Obstructive Lung Disease (GOLD) in collaboration with health care professionals and COPD patient groups throughout the world. Its aim is to raise awareness, share knowledge, and discuss ways to reduce the burden of COPD worldwide.
  • World Children’s Day
    World Children’s Day
    Thu, 20 Nov
    Online Platforms
    20 Nov 2025, 00:00 – 23:50
    Online Platforms
    Each year to promote international togetherness, awareness among children worldwide, and improving children's welfare.
  • World Pancreatic Cancer Day
    World Pancreatic Cancer Day
    Thu, 20 Nov
    Online Platforms
    20 Nov 2025, 00:00 – 23:50
    Online Platforms
    World Pancreatic Cancer Day is celebrated on the third Thursday of November each year. This day serves as a global platform for communities, organisations, and individuals to come together to raise awareness about pancreatic cancer, which is one of the deadliest forms of cancer.
  • International Survivors of Suicide Loss Day
    International Survivors of Suicide Loss Day
    22 Nov 2025, 00:00 – 23:50
    Online Platforms
    International Survivors of Suicide Loss Day is an event in which survivors of suicide loss come together to find connection, understanding, and hope through their shared experience.
  • Streamlining Regulatory & Ethics Approvals
    Streamlining Regulatory & Ethics Approvals
    25 Nov 2025, 13:00 – 16:00
    Zoom
    This session examines how to harmonize, simplify, and accelerate approvals for regulatory and ethics approvals across the continent. Topics include the potential for regional ethics review mechanisms, regulatory reliance models, and leveraging clinical trial networks.
  • World AIDS Day
    World AIDS Day
    Mon, 01 Dec
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    Mon, 01 Dec
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    Tue, 02 Dec
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.

let our stories inspire you

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our corporate members

be the first to know

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

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Physical Address

The Station, 63 Peter Place, Bryanston, Sandton, 2021

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

The Station, 63 Peter Place, Bryanston, Sandton, 2021

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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