Rare Diseases South Africa


Who are we?

Rare Diseases Society of South Africa is a registered NPO, and Public Benefit Organisation. The society aims to ensure that all rare disease patients receive access to treatment and supportive care for improved quality of life.

What is a rare disease?

Individually rare but collectively common, rare diseases include those of genetic origin. They are life threatening or chronically debilitating diseases which are of sich low prevalence that special combined efforts are needed to address them. As a guide, low prevalence is taken as a prevalence of less than 1 per 2000 in the community. Patients affected by Rare Diseases form a minority in our society and receive minimal assistance and attention. Our acknowledgement and investment in these patients can make significant changes to their quality of life.

What are our objectives?

  • Supporting and providing practical aid to individuals and families affected with rare diseases.
  • Creating awareness on rare diseases through providing information to individuals, families, medical professionals, schools, organisations and the general public.
  • Establishing a network between individuals and families affected by rare diseases with relevant organisations, professionals, education and intervention centres.
  • Collaborating with organisations that have the potential to affirm, prevent, improve treatment and increase the quality of life of individuals affected with rare diseases.
  • Promoting medical research on rare diseases.

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