Consideration of a Legislative Framework to Support the Diagnostic Odyssey Commonly Encountered in the Instance of Rare Disease
- 1 April 2020
- journal article
- research article
- Vol. 27 (3), 634-644
Abstract
The diagnostic odyssey refers to the struggle to achieve a diagnosis for a medical condition in the face of significant implications if a diagnosis is not made. It is a common experience for people living with a rare disease. Western Australia has led the way in Australia in being the first State to establish a rare disease policy framework and an Undiagnosed Diseases Program (UDP). The UDP includes an expert panel made up of various specialists brought together with the aim of arriving at a diagnosis through collaboration. This article looks at the possibility of enhancing initiatives such as the UDP through a legislative framework. Relieving the medical, financial and emotional implications of the diagnostic odyssey is particularly important when one considers that taken together, rare diseases affect millions of people globally.Keywords
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