Kelly du Plessis is the founder and CEO of Rare Diseases South Africa (RDSA), a 13-year-old national NGO dedicated to patient navigation, policy advocacy and equitable access to care. Sparked by her son’s diagnosis with Pompe disease, Kelly has spent more than a decade building systems that help rare-disease patients move from confusion to care across both public and private sectors. She also serves on international committees shaping rare-disease research and access, is a Council Member
of Rare Diseases Intenrational as well as the Chair of the Patient Advocacy Committee at the International Rare Disease Research Consortium. Her work has been recognised with the African Leadership Award for Healthcare in 2016 Today, RDSA’s programmes and partnerships support thousands of patients and families each year.