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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 4.1 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

  • Huddle 5: STAKEHOLDER ROUNDTABLE
    Huddle 5: STAKEHOLDER ROUNDTABLE
    30 Nov, 08:50 – 13:30
    Hybrid Event
    Engagement with stakeholders on selected Presidential Health Compact pillars with break-out groups to ensure patient engagement on items included in compact activities.
  • RareX 2024
    RareX 2024
    14 Feb 2024, 08:00 – 17 Feb 2024, 17:00
    Indaba Hotel, William Nicol Drive, Pieter Wenning Road Johannesburg, Fourways, Sandton, 2191, South Africa
    The Third Biennial Rare Diseases Conference will take place in Johannesburg from 14-17 Feb 2024. The purpose of the conference is to provide a forum for rare disease patients, doctors and stakeholders to connect & collaborate, and to facilitate an ongoing dialogue on rare diseases & their treatment.
  • Denim Walk by Night - 2024
    Denim Walk by Night - 2024
    24 Feb 2024, 18:00 – 21:00
    Roodepoort, Malcolm Rd, Poortview, Roodepoort, 1724, South Africa
    Denim Walk – a fun-for-all, evening walk through the beautiful Walter Sisulu National Botanical Gardens. Come and #ShareYourColour with our RARE community, your friends and your family. And please, be sure to wear jeans and an old white shirt as we have some colourful play planned.

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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