Kelly du Plessis is the CEO and founder of Rare Diseases South Africa, a registered NPO. Rare Diseases SA was born out of necessity when her oldest child, Juan, was diagnosed with Pompe disease at 11 months old. Pompe disease is a rare, neuromuscular disorder, which is fatal if left untreated. Having dedicated her life and career to furthering the plight of those impacted by rare diseases in developing countries, Kelly serves on various boards and committees that focus on improving quality of life for rare disease patients.  

In eight years, Kelly has taken rare disease policy and patient advocacy to new heights in South Africa and has presented at various national and international conferences to raise awareness and create a new narrative in terms of treatment and access. Understanding the isolation and lack of support surrounding a rare disease diagnosis, providing a safe place for patients as well as families, and improving patient-centred care has become her passion. There are over 6500 patients and families impacted by rare diseases, and she has assisted these individuals and ensured that patients’ voices are not forgotten.  

Kelly was awarded the African Leadership Award for healthcare (Dec 2016 – Mauritius). Her other recent achievements include winning the Best Patient-Led Health Advocacy group at the Healthcare and Pharmaceutical Awards, successfully launching RareX (the first rare disease conference in Africa), founding Africa-Rare.org (an African alliance for rare diseases), as well as implementing International Rare Disease Day in South Africa. The public awareness campaign reached over 17 million South Africans in 2014.