The RArEST project is a federal government funded initiative that aims to increase awareness, education, support and training for rare diseases among health professionals and within the rare disease community. Rare Voices Australia is looking for people with lived experience … Read More
Today is #GivingTuesday, a global generosity movement, unleashing the power of people and organisations to transform their communities and the world.
From 1 November 2021 people in Australia going through IVF will be able to claim a Medicare rebate for testing that can help them prevent passing serious genetic disorders on to their child. With the support of you, our TSC … Read More
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
The international TSC surveillance guidelines recommend magnetic resonance imaging (MRI) of the abdomen to check for possible renal angiomyolipomas (AMLs) or cysts. In Australia, the high out of pocket costs of an MRI make it difficult for many people with … Read More
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
TSA’s In Safe Hands educational resources are freely available for you to read online or download and print your own copy. Earlier this year we developed a suite of new resources to assist families during the schooling years. The goal … Read More
The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to people in West Australian living with rare, genetic and undiagnosed conditions and their families, and how the community … Read More
The rights of children with disability and medical conditions to safe and accessible transport are not equal to children without disability. Mobility and Accessibility for Children in Australia Inc. (MACA) is a not-for-profit organisation dedicated to supporting and advocating for … Read More
Tuberous Sclerosis Australia is establishing a working group of families and teachers to assist us with the development of some new online resources to help empower parents and teachers/educators about the learning challenges children with TSC often face and how best to support these. Can you help?