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 […]
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/
Research opportunity
This study is investigating the gut microbiome in children and young people. with Angelman Syndrome. If you have a child with Angelman’s Syndrome aged between 4-18yrs, live in Australia and are interested in participating please contact Study Coordinator, Ellen Taylor at ellen.taylor@health.qld.gov.au