Kelly du Plessis, wife and mother of 2 children (aged 7 and 6) and CEO & Founder of Rare Diseases South Africa, a registered NPO born out of necessity when her oldest child 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 5 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. With over 6500 patients/families impacted by rare diseases having been assisted over the past 5 years, Kelly has ensured that the patients voice is never forgotten.
Kelly was recently awarded the African Leadership Award for healthcare (Dec 2016 – Mauritius) with other recent achievements including the successful launch of RareX (the first Rare Disease conference in Africa), founding Africa-Rare.org (an African alliance for Rare Diseases), as well as the implementation of International Rare Disease Day in South Africa (Public awareness campaign reached over 17million South African’s in 2014).
Future plans include further development of Africa-Rare.org across the continent as well as the development and implementation of a multidisciplinary centre of excellence for rare conditions.
CEO/Founder – Rare Diseases South Africa (2013-current)
Founding Member – Africa-Rare.org (2015 – Current)
Vice-Chair – Genetic Alliance South Africa (2016) Previous board member at large, and provincial Chair)
Pulmonary Hypertension Association of South Africa– Board Member at Large (2014 – Current) – Portfolio Head –Policy and Government relations