Article on the diagnosis odyssey that rare disease patients and families face in Australia

Orphanet Journal of Rare Diseases has published an article on the diagnosis odyssey that rare disease patients and families face in AUSTRALIA. According to this article many patients and families believe that there is a considerable delay in receiving a diagnosis and a quarter believe that they received the wrong diagnosis initially. They believe that they have to face this diagnosis odyssey due to the lack of information among health professionals, families, and lack of access to diagnostic tests among others. The article also highlights the announcement of the diagnosis for which 20 % of the families interviewed did not receive the diagnosis in person, which may be caused by the vast geographical area Australia covers. The authors stress the importance of counselling and psychological support to children and their parents when providing a diagnosis. (© Orphanews 15 Mai 2017)

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