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Kelly du Plessis

CEO & Founder

Rare Diseases South Africa


CEO & Founder


Rare Diseases South Africa


South Africa


Rare X






What makes Kelly du Plessis a Global Shaker?

Kelly du Plessis is the CEO & Founder of Rare Diseases South Africa, a registered NPO born out of necessity when her oldest son, 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.

Kelly has dedicated her life and career to furthering the plight of those impacted by rare diseases in developing countries and serves on numerous boards and committees which focus on improving the quality of life for rare patients.

She 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. With over 6500 patients/families impacted by rare diseases having been assisted over the past 6 years, Kelly has ensured that the patient voice is never forgotten.

The determined mother has also launched RareX (the first Rare Disease conference in Africa), co-founded (an African alliance for Rare Diseases), as well as the implementation of International Rare Disease Day in South Africa.

Tags: patient advocacy, Pompe disease, rare diseases, South Africa

Last updated: February 28, 2020