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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.

Back the team who supports the #1in15.

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upcoming events

Wed, 01 Oct
International Gaucher Day
Online Platforms
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01 Oct 2025, 00:00 – 31 Oct 2025, 23:50
Online Platforms
Join us this October for International Gaucher Day. Not just one day — the entire month will be dedicated to raising awareness under the theme: “See the Signs, Shorten the Diagnostic Journey.” Be part of the global campaign, follow daily stories, and help us amplify the voices of Gaucher patients.
Wed, 01 Oct
Dysautonomia Awareness Month
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01 Oct 2025, 00:00 – 31 Oct 2025, 23:50
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Dysautonomia Awareness Month, aims to empower people with the condition and their families. Increased awareness can contribute to improved outcomes and quality of life for people with dysautonomia.
Mon, 06 Oct
World Cerebral Palsy Day
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06 Oct 2025, 00:00 – 23:50
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CP is one of the most common physical disabilities affecting the most vulnerable among us — children. Additionally, CP occurs over the span of a child’s entire lifetime with no cure.
Thu, 09 Oct
World Sight Day
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09 Oct 2025, 00:00 – 23:50
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World Sight Day is observed every year on the second Thursday of October, falling on October 9 this year. It was initiated by the Lions Clubs International Foundation during their ‘SightFirstCampaign’ in an effort to spread awareness about preventable blindness and help people who are visually impai
Fri, 10 Oct
World Mental Health Day
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10 Oct 2025, 00:00 – 23:50
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Mental health grows; we grow along with it. Mental health has come a long way since the early nineties when the World Federation of Mental Health (WFMH) officially established the day. Our self-awareness and sensitivity towards it have changed things for the better.
Sun, 12 Oct
World Arthritis Day
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12 Oct 2025, 00:00 – 23:50
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The day is designed to raise global awareness about the plurality of Arthritis. Doctors and well-wishers try to raise awareness through activities and awareness campaigns. Discussions are held regarding the symptoms connected to arthritis and the importance of early diagnosis.
Wed, 15 Oct
Pregnancy and Infant Loss Remembrance Day
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15 Oct 2025, 00:00 – 23:50
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Pregnancy and Infant Loss Remembrance Day honors those lives lost to miscarriage, sudden infant death syndrome, stillbirth, the death of a newborn, and more
Thu, 16 Oct
World Spine Day
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16 Oct 2025, 00:00 – 23:50
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Back pain is up there with some of the leading causes of disability all over the world and on October 16, thousands of people around the world celebrate and educate others about back and neck health on World Spine Day.
Fri, 17 Oct
World Trauma Day
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17 Oct 2025, 00:00 – 23:50
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Each year with an emphasis on saving lives and how to properly attend to emergency cases. The day is structured to create increased awareness about trauma and to educate the public on ways to address traumatic incidents and deaths.
Sun, 19 Oct
World Pediatric Bone and Joint Day
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19 Oct 2025, 00:00 – 23:50
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More than 130 million globally are impacted by musculoskeletal conditions. Many cases are brought on by obesity developed during childhood. World Pediatric Bone and Joint Day highlights obesity, screening, and prevention.
Mon, 20 Oct
World Osteoporosis Day
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20 Oct 2025, 00:00 – 23:50
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World Osteoporosis Day is a global campaign that focuses on promoting healthy bones through awareness and education. World Osteoporosis Day, Oct 20, advocates worldwide awareness about bone health. Raise understanding to prevent fractures and improve overall bone strength.
Tue, 21 Oct
World Iodine Deficiency Day
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21 Oct 2025, 00:00 – 23:50
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World Iodine Deficiency Day, also known as Global Iodine Deficiency Disorders Prevention Day, is observed annually on 21st October. The day aims to raise awareness about the essential role of iodine in maintaining good health and to emphasize the consequences of iodine deficiency.
Wed, 22 Oct
International Stuttering Awareness Day
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22 Oct 2025, 00:00 – 23:50
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International Stammering/Stuttering Awareness Day 2025 is a global observance dedicated to raising awareness about stammering (also known as stuttering) and promoting understanding and support for individuals who stammer.
Sun, 26 Oct
947 Ride Joburg - Road Races 2025
Johannesburg
register now
26 Oct 2025, 05:00 – 12:00
Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Sunday 26 October 2025, FNB Stadium, Johannesburg.
Tue, 25 Nov
Streamlining Regulatory & Ethics Approvals
Zoom
register now
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.

let our stories inspire you

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

Rare Diseases South Africa Brings “Safe Beginnings” to Charlotte Maxeke for World Patient Safety Day

Johannesburg, South Africa – 17 September 2025 – The bustle of Charlotte Maxeke Johannesburg Academic Hospital looks a little different...