Health-related out-of-pocket expenses for children living with rare diseases
Some time ago Tuberous Sclerosis Australia (TSA) and Mito Foundation came together to support research examining costs incurred by families in Australia with children living with chronic and complex diseases. 13 families – 10 with TSC – generously gave their … Read More
Research Round Up October 2021
Here is the latest issue of Research Round Up for October 2021.
Beyond the Guidelines: How We Can Improve Healthcare for People with TSC Around the World
About this paper TSC International (TSCi), which is a consortium of organisations including TSA that support individuals with TSC around the world, has published a companion paper to the updated TSC management and surveillance guidelines. Beyond the Guidelines examines the … Read More
Updated International Guidelines for TSC
About this paper The international guidelines provide the ‘gold standard’ for TSC diagnosis, surveillance and management. These are the first significant updates since 2013 and reflect advances in knowledge and approvals of new therapies. What was the process used to … Read More
Research into experiences of caring for a child with complex needs
It’s national carers week and the Royal Children’s Hospital, Murdoch Children’s Research Institute, Australian Genomics Genetic Epilepsy Team Australia (GETA) and The Epilepsy Foundation are working together on a research project to find out more about people’s experiences of caring … Read More
New clinical trial in Brisbane
Clinical trial investigating potential treatment for irritability associated with autism spectrum disorder (ASD) in adolescents aged 13 to 17 Research has shown the gut bacteria of autistic children is different to non-autistic children. It is possible that certain bacteria derived … Read More
Have your say in the GeneEQUAL study
GeneEQUAL is a new study in NSW looking at how we can provide inclusive genomic healthcare. The first step involves interviews with adults with intellectual disability about their experiences with genetic services, even if that happened when they were a … Read More