Addressing Underdiagnosis; Search & Rescue Australia
Addressing Underdiagnosis; Search & Rescue Australia Thank you to data compiled and published through the National Disability Insurance Scheme (NDIS) we have been able to confirm what we had suspected, that compared to the estimated prevalence (often cited as 1:15,000*) up to 75% of Australians are not properly diagnosed. There are currently 509 individuals identified […]
Registry update
The Global Angelman Syndrome Registry; updates This is a project the Australian community should be incredibly proud of, designed for individuals diagnosed with Angelman syndrome and those working towards research and treatments. There are over 2400 participants across 94 different countries. We have been involved in eight different publications and the Registry is available, […]
The Clinic Network; asNavigators
Aligning with our goal of providing access to best practices in care and treatments for all Australians living with AS. Three FAST funded clinical nurse coordinators are working in existing clinics, boosting previous capacity. Currently, efforts are underway to foster collaboration among nurses across all sites, forming a cohesive network.
FAST funded paper
Estimating the impact of Angelman syndrome on parental productivity in Australia using productivity-adjusted life years.
Australian Clinical Trial
Now recruiting in Melbourne, Sydney and Brisbane. Further details are at angelmanstudy.com.au/ & clinicaltrials.gov/