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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! 

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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.

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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.

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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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Back the team who supports the #1in15.

upcoming events

  • Auto-inflammatory Awareness Month
    Auto-inflammatory Awareness Month
    Fri, 01 Aug
    Online Platforms
    01 Aug 2025, 00:00 – 31 Aug 2025, 23:50
    Online Platforms
    Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
  • Spinal Muscular Atrophy Awareness Month
    Spinal Muscular Atrophy Awareness Month
    Fri, 01 Aug
    Online Platforms
    01 Aug 2025, 00:00 – 31 Aug 2025, 23:50
    Online Platforms
    Spinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
  • Gastroparesis Awareness Month
    Gastroparesis Awareness Month
    Fri, 01 Aug
    Online Platforms
    01 Aug 2025, 00:00 – 31 Aug 2025, 23:50
    Online Platforms
    Gastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
  • Webinar: Epilepsy and Women
    Webinar: Epilepsy and Women
    Thu, 28 Aug
    Zoom
    28 Aug 2025, 15:00 – 16:00
    Zoom
    Epilepsy doesn’t just affect individuals; it impacts families and caregivers too. Join Epilepsy South Africa as we hear from women living with epilepsy and those who walk alongside them every day.
  • National Inherited Disorders Day
    National Inherited Disorders Day
    Mon, 01 Sept
    Online Platforms
    01 Sept 2025, 00:00 – 23:50
    Online Platforms
    There are between 4 000 and 6 000 diagnosed genetic disorders, with an estimated one in 25 children affected by such a disorder. Some genetic disorders are apparent at birth while others are diagnosed at different stages throughout childhood.
  • World Leukemia Day
    World Leukemia Day
    Thu, 04 Sept
    Online Platforms
    04 Sept 2025, 00:00 – 23:50
    Online Platforms
    World Leukemia Day is a global campaign run in collaboration by patient groups from across the globe. It’s the one day of the year people from all around the world can come together to help raise awareness of leukemia. By raising awareness of leukemia and educating the world on
  • World Physiotherapy Day
    World Physiotherapy Day
    Mon, 08 Sept
    Online Platforms
    08 Sept 2025, 00:00 – 23:50
    Online Platforms
    World PT Day theme is healthy ageing, with a focus on preventing falls and frailty
  • World First Aid Day
    World First Aid Day
    Tue, 09 Sept
    Online Platforms
    09 Sept 2025, 00:00 – 23:50
    Online Platforms
    World First Aid Day raises awareness about the crucial role of First Aid in saving lives. The mission is to encourage everyone to commit to learning first aid and equip themselves with the skills needed to act swiftly and effectively in emergencies.
  • International Gynaecological Health Day
    International Gynaecological Health Day
    Wed, 10 Sept
    Online Platforms
    10 Sept 2025, 00:00 – 23:50
    Online Platforms
    This awareness day emphasises the critical importance of gynaecological health as foundational to a woman’s overall wellness. It centers on raising awareness that regular gynecological care—covering the uterus, ovaries, fallopian tubes, and vagina—is vital for hormonal balance, reproductive function
  • World Alzheimer's Month
    World Alzheimer's Month
    Fri, 12 Sept
    Online Platforms
    12 Sept 2025, 00:00 – 23:50
    Online Platforms
    World Alzheimer's Month takes place every September and World Alzheimer's Day is on 21 September each year. It's a global opportunity to raise dementia awareness and support people affected by the disease.
  • World Sepsis Day
    World Sepsis Day
    Sat, 13 Sept
    Online Platforms
    13 Sept 2025, 00:00 – 23:50
    Online Platforms
    The global focus is stronger than ever: reducing sepsis-related deaths, promoting prevention, and spotlighting milestones in the 2030 Global Agenda for Sepsis.
  • World Lymphoma Awareness Day
    World Lymphoma Awareness Day
    Mon, 15 Sept
    Online Platforms
    15 Sept 2025, 00:00 – 23:50
    Online Platforms
    World Lymphoma Awareness Day is observed annually on September 15 to raise awareness about lymphoma, a type of cancer affecting the lymphatic system.
  • World Patient Safety Day
    World Patient Safety Day
    Wed, 17 Sept
    Online Platforms
    17 Sept 2025, 00:00 – 23:50
    Online Platforms
    World Patient Safety Day (WPSD) is observed annually on 17 September, as established by the World Health Assembly resolution WHA72.6. It serves as a global call to action, uniting patients, families, health workers, policymakers, and civil society to advance patient safety worldwide.
  • Usher Syndrome Awareness Day
    Usher Syndrome Awareness Day
    Sat, 20 Sept
    Online Platforms
    20 Sept 2025, 00:00 – 23:50
    Online Platforms
    This day we aim to raise awareness about Usher syndrome, a genetic condition that causes combined deafness and blindness.
  • World Lung Day
    World Lung Day
    Thu, 25 Sept
    Online Platforms
    25 Sept 2025, 00:00 – 23:50
    Online Platforms
    The respiratory conditions have a significant societal and economic cost, with the burden negatively affecting healthcare systems, impacting the lives of patients and their families, lowering productivity, and widening the gap in life expectancy between the poorest and wealthiest. A significant prop
  • World Contraception Day
    World Contraception Day
    Fri, 26 Sept
    Online Platforms
    26 Sept 2025, 00:00 – 23:50
    Online Platforms
    World Contraception Day is observed on September 26th each year. This day aims to raise awareness about contraception and empower individuals to make informed choices regarding their sexual and reproductive health.
  • World Rabies Day
    World Rabies Day
    Sun, 28 Sept
    Online Platforms
    28 Sept 2025, 00:00 – 23:50
    Online Platforms
    This year on September 28, we are calling on you, me, and our communities to make a difference now! For the first time in its 19-year history, 2025’s theme does not include the word "rabies", showing how well-established this movement has become.
  • World Heart Day
    World Heart Day
    Mon, 29 Sept
    Online Platforms
    29 Sept 2025, 00:00 – 23:50
    Online Platforms
    Every year, over 17 million people die from heart disease. As a way to fight this, the World Heart Federation created World Heart Day. It’s an event held every year on September 29.

let our stories inspire you

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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

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Contact us

Telephone +27 10 594 3844
Hotline 072 476 7552
hello@rarediseases.co.za

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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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