Consideration of a Legislative Framework to Support the Diagnostic Odyssey Commonly Encountered in the Instance of Rare Disease

Marisa Taliangis, Gareth Baynam

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)634-644
Number of pages11
JournalJournal of Law and Medicine
Volume27
Issue number3
Publication statusPublished - 1 Apr 2020

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