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?
We would like to invite our TSC Community to join in a very time-sensitive, international research project aimed at finding out how individuals with special needs are coping with the coronavirus (COVID-19) pandemic and all its repercussions. Dr Ru Ying … Read More
Today the Hon Greg Hunt, Minister for Health, launched the first Australian National Strategic Action Plan for Rare Diseases at Parliament House in Canberra. This plan commits the Australian Government to action under three pillars: Awareness and Education … Read More
Rare Voices Australia (RVA) has just launched a new report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. The report highlights significant unmet need and a need for the health and disability sectors to collaborate to … Read More