Martin Good RNSH NF Clinical Nurse Specialist, Tina Gonzalez Genetic Counsellor, Ruth Lindsay CTF Head of Support Services, Sue-Faye Siow NF Clinical Geneticist and Neurologist, Leonie Crowe NF Social Worker, Alicia Zadeian CTF Support Coordinator, Sally Maspero CHW NF Clinical Nurse Specialist.
Open Day Aids Young Adults with Neurofibromatoses The first Neurofibromatoses (NF) transition open day took place at RNSH, uniting various services. It aimed to assist young adults shifting from paediatric to adult NF services in NSW. The collaborative event involved RNSH Neurofibromatosis Clinical Service, Children’s Hospital Westmead (CHW) Neurogenetics Service, CHW Trapeze Transition Team, and Children’s Tumour Foundation. Neurofibromatoses are a group of inherited conditions that make people more likely to develop tumours. These conditions, Neurofibromatosis Type 1, NF2-associated schwannomatosis, and Schwannomatosis, can lead to serious health issues, especially in young adults, with higher chances of illness and death. People with NF need complex care involving various medical areas. Transitioning from child to adult care poses a specific challenge for these patients. The hybrid event, both online and in person, provided crucial information for transitioning to adult care and facilitated engagement with NF clinical and support services. Young adults and parents expressed satisfaction, emphasising the value of the day. Positive feedback indicates interest in future events focused on improving transition care and enhancing the patient experience for young people with NF. “This successful event was thanks to the massive effort by the organising team and dedicated patients and their families who generously contributed to improving transition care for individuals with NF across NSW. We hope to expand this open day nationwide and look forward to engaging with young adults with NF across Australia,” said Dr Sue-Faye Siow, Staff Specialist Clinical Geneticist and Neurologist.
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NSLHDNEWS | ISSUE 2| 9 FEBRUARY 2024
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