Facilitating a framework for managing rare diseases in South Africa: Comparative insights from the UK and Italy

Abstract

Managing and treating rare diseases is a global concern, largely because of their rarity and the complexities associated with their care. Robust ethico-legal frameworks governing rare diseases are essential as they establish coordinated guidelines that ensure patients receive the care and support which they require. This article examines and compares the existing frameworks for rare diseases in the United Kingdom and Italy, with those in South Africa (SA), highlighting the differences and similarities in how they operate, towards facilitating a national framework that suits our context. The recommendations offer proposed solutions to add to the ongoing dialogue regarding the current lack of governance for rare diseases in SA. The article further calls for a coherent national framework to better address and represent the needs and rights of individuals affected by rare diseases. SA requires a systematic approach, with clear guidelines for diagnosing, treating and funding rare diseases. This approach would establish a basis for efficient resource allocation and equitable access to essential treatments.