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Charity profile

Rare Diseases South Africa is a registered NPO (120-991), NPC (2016/071131/08) and Public Benefit Organization (930060119) assisting all patients impacted by rare diseases to access life-saving treatment and supportive care for improved quality of life.

Established in 2013 by Kelly du Plessis from personal need on the diagnosis of her son with Pompe disease. RDSA provides support, patient advocacy and a network to rare disease patients in South Africa.

Our Key Objectives:

Patient Navigation
Ensure a challenge-free, supported journey from presentation of symptoms to end-of-life for patients affected by rare diseases.

Advocacy and Expanding Access
Represent patients affected by rare diseases with regards to policy, healthcare costs and delivery.

Community Engagement
Collaborate with civil society to ensure greater awareness and networking platforms for rare diseases in South Africa.

Rare Disease patients form a minority of our society and receive little help or attention. Our acknowledgement and investment can make significant changes to a rare disease patients’ quality of life. With timely and accurate diagnosis and intervention, people with rare diseases can contribute significantly and positively towards our society.

Individually rare but collectively common, Rare Diseases are disorders including those of genetic origin, which are life threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.