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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

Tue, 08 Jul
Bereaved Parents Awareness Month
Online Platforms
Learn more
08 Jul 2025, 10:30 – 31 Jul 2025, 23:50
Online Platforms
Bereaved Parents Awareness Month is dedicated to raising awareness about the grief parents go through after the unfortunate loss of a child and the kind of support needed to overcome this unimaginable grief.
Tue, 08 Jul
Juvenile Arthritis Awareness Day
Online Platforms
Learn more
08 Jul 2025, 10:30 – 31 Jul 2025, 23:50
Online Platforms
Arthritis does not pick any age, let's use the seventh month of the year to honour the brave children dealing with this autoimmune disease.
Tue, 08 Jul
Cleft Palate and Cranio-Facial Awareness
Online Platforms
Learn more
08 Jul 2025, 10:40 – 31 Jul 2025, 23:50
Online Platforms
National Cleft and Craniofacial Awareness and Prevention Month is an opportunity to raise awareness and improve understanding of orofacial clefts, clefts of the lip and palate, and other conditions of the head and face.
Tue, 08 Jul
Arachnorditis Awareness Month
Online Platforms
Learn more
08 Jul 2025, 10:40 – 31 Jul 2025, 23:50
Online Platforms
Arachnoiditis is a rare condition that happens when there’s inflammation of the arachnoid. The arachnoid is one of the membranes that surround and protect the spinal cord and its nerves.
Tue, 22 Jul
Fragile X Awareness Day
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22 Jul 2025, 00:00 – 23:50
Online Platforms
National Fragile X Awareness Day is observed on July 22 every year. The objective of the day is to raise awareness about Fragile X syndrome (F.X.S.). F.X.S. is the “most common inherited cause of autism and intellectual disabilities worldwide.” It has no cure at present.
Wed, 23 Jul
Acute Necrotix Encephalopothy
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Learn more
23 Jul 2025, 00:00 – 23:50
Online Platforms
Acute necrotizing encephalopathy, is a rare type of encephalopathy characterized by multiple bilateral brain lesions, mainly involving the thalami, but also the putamina, internal and external capsules, cerebellar white matter, and the brainstem tegmentum.
Wed, 23 Jul
World Castleman Disease Day
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23 Jul 2025, 00:00 – 23:50
Online Platforms
World Castleman Disease Day is recognised each year on July 23 by the entire CD community — patients, loved ones, physicians and researchers. It marks a time when everyone unites to build greater awareness for Castleman disease, to support patients who are living with this disease.
Mon, 28 Jul
World Hepatitis Day
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28 Jul 2025, 00:00 – 23:50
Online Platforms
World Hepatitis Day is held each year to raise awareness about hepatitis, a group of infectious diseases that attack the liver and affect people all over the globe. The day also promotes testing and prevention for all five types of the disease: A, B, C, D and E.
Fri, 01 Aug
Rheumatic Fever & Rheumatic Heart Disease Awareness Week
Awareness Day
Learn more
01 Aug 2025, 00:00 – 07 Aug 2025, 23:50
Awareness Day
Rheumatic fever is an inflammatory disorder that affects the body's connective tissue, resulting in temporary painful arthritis and other symptoms.
Fri, 01 Aug
Auto-inflammatory Awareness Month
Online Platforms
Learn more
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.
Fri, 01 Aug
Spinal Muscular Atrophy Awareness Month
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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.
Fri, 01 Aug
Gastroparesis Awareness Month
Online Platforms
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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.
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.

let our stories inspire you

The Quiet Strength of Fathers: A Father’s Day Tribute from the Rare Disease Community

“A good father is one of the most unsung, unpraised, unnoticed, and yet one of the most valuable assets in our society.” – Billy Graham ...

2 min read

A Father's Strength: A Tribute to My Dad this Father’s Day

When people ask me where my strength comes from, I often smile—because the truth is, it started with my dad. Image supplied by Kerry...

1 min read

20 Years in the Dark: My Journey to an Ehlers-Danlos Syndrome Diagnosis

Supplied: Chloe Davies, Age 24 I was diagnosed with Ehlers-Danlos Syndrome (EDS) just last year — but my symptoms started when I was only...