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
We are pleased to share news that everolimus (Afinitor) for epilepsy has been added to Australia’s pharmaceutical benefits scheme (PBS). Today the Federal Health Minister, the Honourable Greg Hunt announced that this medicine to treat seizures for people with TSC … Read More
We are pleased to share news that Everolimus (Afinitor) for epilepsy has been given a positive recommendation by the pharmaceutical benefits advisory committee (PBAC). This is a recommendation to the Federal Health Minister to add this medicine to the pharmaceutical … Read More
Today we celebrate the academic publication of results from the Treatment trial. This research developed a topical cream to treat the small tumours that grow on the face of people with tuberous sclerosis. While these tumours, called angiofibromas, do … Read More
Thank you to all the members of the TSC community who made a contribution to our draft submission to the pharmaceutical benefits advisory committee (PBAC). The submission to include Afinitor (Everolimus, an mTOR inhibitor medicine) on the pharmaceutical benefits scheme (PBS) … Read More