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Rare Diseases South Africa: What We Do

by Editor

Did you know that 1 in 15 South Africans is affected by a rare disease? That is the equivalent of 1 player in every rugby team. Rare Diseases South Africa (RDSA) a registered non-profit organisation (NPO 120-991), represent the 1 in 15 people affected for greater recognition, support, improved health service and better overall quality of life.

Founded in 2013 by Kelly du Plessis out of personal need following the diagnosis of her son with a rare metabolic disorder called Pompe Disease, RDSA’s goals have been to reach out to South Africa’s rare disease patients and their carers and raise general awareness of these issues.

Whilst each individual disease is rare, together we are a community of over 4.1 million in South Africa! Yet those living with a rare disease and their families are often coping alone and in silence. Whether they depend on state or private healthcare, many receive little or no financial assistance or specialist care.

With more than 7000 known rare diseases, collectively they are more common than anticipated. Our mission is to ensure a better tomorrow for all those impacted.

RDSA provides services to patients, and those supporting them, who are navigating the complex healthcare system. We collaborate directly with patients to ensure they have a voice in their care and have access to information to promote informed decision making.

Patient Navigation is the process by which we guide patients from presentation of symptoms, through to end-of-life care – through and around barriers in the complex healthcare system – to help ensure timely diagnosis and treatment.

Whether you are 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. Rare is many, rare is strong, rare is proud! Get involved and help us to leave a legacy… a better tomorrow. Find out more about our cause at www.rarediseases.co.za

Rare Diseases Facts

  • There are over 7,000 rare diseases described to date affecting over 350 million people worldwide.
  • Rare is not scarce, rare is not infrequent, and rare is not remote. In fact – rare is not as rare as you think.

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