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
In December, the Pharmaceutical Benefits Advisory Committee (PBAC) will consider an application from Novartis for Everolimus/Afinitor to be listed on the Pharmaceutical Benefits Scheme (PBS) for people with TSC who are experiencing seizures that do not respond well to available … Read More
In July, the Pharmaceutical Benefits Advisory Committee (PBAC) will consider an application from Novartis for Everolimus/Afinitor to be listed on the Pharmaceutical Benefits Scheme (PBS) for people with TSC who are experiencing seizures that do not respond well to available … Read More
We’ve updated our information on the availability of this new treatment for facial angiofibromas.
The Elizabeth Pinkerton Memorial award is given annually by TSA to a health professional to recognise their efforts to improve the lives of TSC affected families in Australia. Nominations close on Friday 29th July.