Kelly du Plessis is the CEO & founder of Rare Diseases South Africa, a registered nonprofit organisation dedicated to helping those impacted by rare diseases in developing countries. Kelly founded the organisation after her oldest child was diagnosed with Pompe disease. Pompe is a rare, neuromuscular disorder that is fatal if left untreated, but for which no treatment was available in their home country.
For six years, Kelly has furthered the cause of rare disease policy and patient advocacy in South Africa, presenting at national and international conferences and supporting over 6,500 people impacted by rare diseases. She has been awarded the African Leadership Award for healthcare; launched RareX, the first rare disease conference in Africa; founded Africa-Rare.org, an African alliance for rare diseases; and implemented International Rare Disease Day in South Africa.