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Name
Kelly Du Plessis
Bio
Kelly du Plessis is wife and mother of two children (aged 10 and 11) and the CEO and founder of Rare Diseases South Africa RDSA), a registered NPO.
RDSA 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. At the time, treatment for this rare condition was not available in South Africa, and so Kelly’s personal journey of patient advocacy started.
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 which focus on improving the quality of life for rare 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 for rare patients. 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 andfamilies impacted by rare diseases, and Kelly has assisted these individuals and ensured that patients’ voices are not forgotten.
RDSA 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. At the time, treatment for this rare condition was not available in South Africa, and so Kelly’s personal journey of patient advocacy started.
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 which focus on improving the quality of life for rare 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 for rare patients. 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 andfamilies impacted by rare diseases, and Kelly has assisted these individuals and ensured that patients’ voices are not forgotten.
