When the Code Speaks

What does personalised medicine actually feel like when you’re the person living with a rare disease? In this episode of When the Code Speaks, we step away from the science and systems of genomic medicine and into the lived experiences of Marc Bulman and Kate Olivier, two UCT students navigating their own health journeys. We talk about diagnosis, uncertainty, searching for answers, navigating healthcare and the ways patients and families often have to become researchers, advocates and educators along the way. We also explore what it means to feel heard and supported when an answer isn’t always immediately available and why genomic medicine needs to keep the people behind the data at its centre. It’s an honest conversation about rare disease, resilience, hope and what it really means to practise patient-centred genomic medicine in South Africa.

Good science communication can be the difference between information being understood and information being lost. This episode explores the role of clear, accessible and compassionate communication in improving care for people living with rare and complex conditions, and in helping patients and families navigate healthcare systems. We discuss why communicating science is not just about sharing knowledge, but about building understanding, trust and better connections between patients, healthcare professionals and researchers. Guest: Dr Lienka Botha

Patient advocacy and effective communication are fundamental to shaping the future of genomic medicine. In this episode, we explore how advocacy organisations support individuals and families affected by rare diseases, foster collaboration between patients, researchers and clinicians, and help drive more equitable, patient-centred healthcare in South Africa. We also discuss why communication should be recognised as an essential part of care, how trust is built through more human-centred conversations, and why making genomic medicine more accessible starts with the language we choose.

As genomic medicine continues to evolve, so too must the workforce that will deliver it. In this episode of When the Code Speaks, we are joined by Prof Jeannine Heckmann, Dr Tarin Europa and Mr Waheed Amanjee to discuss the importance of education, training and capacity building in shaping the future of genomic medicine in South Africa. Together, we explore the skills needed for the next generation of clinicians, scientists and healthcare professionals, the challenges of integrating genomics into healthcare education, and the value of interdisciplinary learning. From mentorship and professional development to creating opportunities for emerging scientists, this conversation examines what it will take to build a workforce equipped to translate genomic advances into better patient care.   Guests: Prof Jeannine Heckmann, Dr Tarin Europa and Mr Waheed Amanjee.

What does it actually take to generate high-quality genomic data? In this episode of When the Code Speaks, we go behind the scenes of genomic sequencing to explore the technologies, laboratories and infrastructure that make precision medicine possible. Joined by our guests, we discuss the journey from sample to sequence, the challenges of establishing and sustaining sequencing capacity in South Africa and why local infrastructure is essential for advancing both research and clinical care. From the realities of operating cutting-edge sequencing platforms to the importance of partnerships, accessibility and long-term investment, this conversation shines a light on the often-unseen systems that underpin modern genomic medicine. Guests: Dr Nadia Carstens and Acclaim Moila.