Previously, there were three clinics for people in Australia with AS. These clinics are based in Melbourne, Sydney, and Brisbane.  These clinics have been able to increase the dates they can offer families with the addition of three clinical nurse coordinators, funded by FAST Australia for two years.  Traditionally the clinics have had a set client list who they care for regularly. All the clinics only accept individuals under 18 years of age. People living in States without clinics, or regional and remote families are generally unable to receive care management through these three clinics.

There are currently 509 individuals identified as diagnosed with AS in Australia under the age of 65*, 47% live in the greater Melbourne, Sydney, and Brisbane areas, and 30% of individuals live in areas classified as Regional*. Prevalence rates (1:15,000) indicate there should be approximately 1700 individuals (something we are also addressing in our underdiagnosis program; Search & Rescue Australia), we anticipate this is due to two factors, lack of understanding into the syndrome and lack of access to testing before 2000.

Through the established clinicians and nurses, we have been able to attract all four current clinical trials for Angelman Syndrome to Australia, growing our capacity to perform up-to-date assessment measures relevant for AS. This success has built a strong reputation for our ability to host and recruit for trials, laying the framework for effectively delivering therapeutics if and when they become available.

This project is in the early stages, big visions take time. The goal of asNavigators is to expand on the expertise the current clinics can offer to people who have previously been unable to access clinicians with unique expertise in AS and empower them and their local care team with targeted management and care plans, there are several innovative ways we are hoping to address this. It is hoped that by expanding knowledge in Angelman Syndrome through the asNavigators program, diagnosis rates will be improved.

Stay tuned for version one of the asNavigators website, where the concept behind the name will become clearer!

*NDIS data Mar24. *NDIS data supplied Sept23.