Meet the Nurses Your Gateway to Support at the Centre of Expertise скачать в хорошем качестве

Meet the Nurses Your Gateway to Support at the Centre of Expertise

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