Fair in Rare: Equity in the management of Rare Diseases
These presentations occurred at a hybrid webinar that was dedicated to addressing equity challenges in rare diseases. This event marked 15 years of progress in the rare disease landscape while focusing on actionable strategies to continue advancing equity across care, diagnostics, and research. The webinar is now available as 4 bite-sized videos you can watch at your own pace. The discussions highlighted successful approaches implemented over the past decade and a half, charting a path forward to overcome remaining barriers. This event brought together healthcare professionals, researchers, patient advocates, and policymakers committed to advancing equity in the rare disease space.
Fair in Rare: Equity in Every step: Setting the scene- Prof Malherbe
In this video, Prof Malherbe sets the scene of Rare Diseases in South Africa. The content covered includes the definition of Rare Disease through the concepts of Equality and Equity in Rare Diseases Healthcare.
Fair in Rare: Equity in Every step: Tools that changed outcomes- Dr Jeevarathnum
In this video, Dr Jeevarathnum discusses Rare Diseases from the clinician’s experience as well what should trigger “Rare Disease thinking”. Dr Jeevarathnum further covers how clinician’s can manage Rare Disease expectations.
Fair in Rare: Equity in Every step: Conceptual Framework Prof Vorster
In this video, Prof Vorster covers the conceptual framework for Fair in Rare. Prof Vorster takes the viewer from what is required for diagnosis, through to testing and laboratory access and analysis and post-analytical support.
Fair in Rare: Equity in Every step: Global Context- Prof Malherbe
In this final video, Prof Malherbe takes the viewer through Rare Disease initiatives and resolutions from a Global perspective, translates it to implications for South Africa as well as an implementation of a Rare Disease Advisory Board.
