Rare genetic disease and the diagnostic odyssey: a caregiver’s journey

11月 16, 2022 Bullet
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In December 2021, Arihai Greene was born with signs of Prader-Willi syndrome (PWS), a rare and serious genetic disorder that includes a complex spectrum of cognitive, behavioural and developmental problems. In this session, his father will discuss the diagnostic odyssey, including the emotional experience of navigating the Singapore healthcare system and coping with a PWS diagnosis. He will also highlight opportunities for healthcare professionals to improve the patient experience in rare disease diagnostics and clinical care.

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