To mark the start of November's 100-day countdown to Rare Disease Day 2025, the global awareness day taking place on 28 February 2025, host Julien Poulain ventures beyond Europe to speak with Kelly du Plessis, Chief Executive Officer and Founder of Rare Diseases South Africa, and mother to a teenage son living with Pompe disease.
Kelly shares with Julien her extraordinary journey, from her son’s diagnosis at just 11 months old to securing a life-saving treatment only 10 days later. She reflects on the formidable barriers she faced in accessing this treatment, the relentless determination required to overcome them, and how these challenges inspired her to establish Rare Diseases South Africa over a decade ago.
Kelly then delves into the unique challenges of advancing rare disease care in South Africa, including systemic inequities and the uncertainties surrounding the country's new national health insurance system. She also highlights opportunities for progress, such as tackling cultural stigmas, fostering stronger community connections, and improving health literacy.
Ultimately, Kelly offers advice and inspiration to parents and advocates starting their own rare disease journeys, underscoring the importance of resilience, action, and hope.
Contact the podcast by emailing RareOnAir@eurordis.org and join the conversation on social media using the hashtag #EurordisRareOnAir.
