Meet the Nurses Your Gateway to Support at the Centre of Expertise
Автор: Prader-Willi Research Foundation Australia
Загружено: 2026-01-23
Просмотров: 0
Описание:
In this recorded webinar, families and clinicians are introduced to the Prader-Willi syndrome (PWS) Nurse Coordinators based at Sydney Children’s Hospital and Queensland Children’s Hospital.
Hosted by Kathlene Jones, CEO of Prader-Willi Research Foundation Australia, this session explains how the PWS Centre of Expertise was developed, why nurse coordinators are critical for families, and how this service supports people with Prader-Willi syndrome from diagnosis through childhood and beyond.
Important note: This webinar provides general information only and does not replace individual medical advice. Always seek advice from your healthcare team for personal medical decisions.
Chapters
00:00 Welcome and introduction
00:45 Acknowledgement of Country and Giving Day message
03:20 What is the PWS Centre of Expertise?
06:30 Introducing the panel
07:30 Clinical perspective on PWS and early support
09:05 Role of the PWS Nurse Coordinator (Sydney Children’s Hospital)
12:50 Vision for national care and clinical networks
20:25 Role of the PWS Nurse Coordinator (Queensland Children’s Hospital)
27:15 The experience of diagnosis and family overwhelm
28:10 Supporting families after a new diagnosis
33:30 Real-world examples: growth hormone and care coordination
35:00 How families can contact the nurse coordinators
36:45 Expanding services to other states and adult care
44:45 When should families and GPs reach out for help?
53:20 Final reflections and closing remarks
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