This is an exciting year for AS, as recent clinical trials have commenced in the United States and Europe and early reports are encouraging that the clinical trials are having a positive impact. To ensure that all people with AS get access to a quality and consistent standard of care, The Foundation for Angelman Syndrome Therapeutics (FAST Australia) are working with a number of dedicated healthcare and research professionals to fund a ‘coordinated care model’ for individuals with AS. This network of professionals will come together to create a clinical trial network and virtual ‘Centre of Excellence’, providing the latest knowledge and evidence-based strategies to all families, to ensure every AS individual receives consistent care across the country.
“Covid19 has presented us with a unique opportunity to utilise telehealth in a way that is ideal for children and with complex medical conditions “, says Meagan Cross, FAST Australia Chairperson. “This type of model is translatable to other rare disease populations and would mean that people living in remote locations are not disadvantaged in their care, it also provides invaluable education to the local practitioners”.
The virtual ‘Centre of Excellence’ will also enable the development of a clinical trial network and make Australia a highly desirable location for future and expanding pharmaceutical and biogenetic trials.
Australia is lucky to have two organisations working side-by-side and dedicated to people with Angelman syndrome – Australian Angelman Syndrome Association (ASAA) and Foundation for Angelman Syndrome Therapeutics (FAST Australia). With a shared vision to improve the quality of life for people and families living with AS, ASAA provides advocacy, support and helps families navigate the day to day of life with the condition, while FAST is dedicated to advancing research into therapeutics and interventions to help treat the syndrome. The ASAA are very excited to support this FAST Australia initiative, and will be closely involved, having established the first dedicated Angelman syndrome clinic in Sydney in 1993.