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Lend your voice to the voiceless, tell your story to educate or use your passion and athletic ability to raise awareness and funds... 

We believe in collaboration – together we can achieve so much more!

patient voices

The Patient Voices programme was developed with the aim of ensuring that our work is continuously shaped by the patients we represent. 


This project allows the patient community to assist RDSA in:

  • developing new resources

  • influencing policy development

  • providing insight to patient medication and device development

  • providing extended peer-to-peer support to ensure that patients do not feel isolated 

  • helping us raise awareness of rare and genetic diseases across South Africa

rare ACTIVists

Whether you run, ride or swim (competitively or recreationally), use your mobility for the benefit of those without. Sign up as a Rare ACTIVist and help create awareness and a platform for fundraising to assist patients and families affected by rare diseases.  

charity champions

A Charity Champion is someone who can commit time and effort to not only fundraising but raising awareness within their community. Click below to see some of our charity champions who do amazing things for Rare Diseases South Africa, of their own accord. You could be one of them…


We are honoured to have people who give their time selflessly to Rare Diseases South Africa. You provide valuable resources and manpower that enable us to carry out our work and events.


rare bear project

The #RareBearProject is all about supporting our community. From providing support to our Rare families, to creating jobs and

income-generating opportunities for the woman of Kya Sands.


100% of our income goes straight back into this project.

For every donation of R180, R120 is paid to the creator of the bear, and R60 is placed into improving the marketing platform and distribution of the overall project to ensure sustainability.

The #RareBearProject is a community upliftment program under Rare Diseases South Africa NPC. Rare Diseases South Africa NPC is a registered NPO and PBO which aims to assist rare disease patients receive access to life-saving treatment and supportive care for improved quality of life.

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