To provide the support families living with Angelman syndrome need to navigate the healthcare demands presented by this complex disorder.
The first Angelman syndrome Clinic opened in Sydney in October 1993 and successfully operated for many years due to the dedication of Dr Robert Leitner (Developmental Paediatrician) and Dr Ellie Smith (Consultant Cytogeneticist) and the support of the Angelman Association of Australia.
The Angelman Clinical Network grew from these roots. asnavigators, or Angelman Syndrome Clinical Nurse Coordinators, are now placed in clinics in Melbourne and Brisbane thanks to funding provided by the Foundation for Angelman Syndrome Therapeutics Australia. These clinics are for families with Angelman syndrome and for healthcare providers keen to support patients with Angelman syndrome.
Advances in telehealth mean we can now support all families impacted by Angelman syndrome regardless of age or geographic location. In fact, that’s vitally important to us. We know that families living outside capital cities are less likely to receive an Angleman syndrome diagnosis and less able to access specialised services.
Please connect with us and we will help you get the support you need.
asnavigators is an initiative of the Foundation for Angelman Syndrome Therapeutics (FAST Australia)aims to support individuals with Angelman syndrome through timely diagnosis, access to best practices in care and treatments, and advancing research. FAST has provided funding for a pilot program to support the Clinical Nurse Coordinator positions to evaluate care pathways and monitor emergency presentation patterns.
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