TSA’s new telehealth nurse
We are very excited to announce that Kim Kerin-Ayres will be joining TSA as our new telehealth nurse.
Positive Phase 3 Trial Results for EPIDIOLEX®
GW Pharmaceuticals has announced positive top-line results of a Phase 3 clinical trial of EPIDIOLEX® (cannabidiol or CBD) CV in the treatment of seizures associated with Tuberous Sclerosis Complex (TSC). This is exciting news and a step further along the … Read More
Nominate a health professional for the Elizabeth Pinkerton Memorial Award
The Elizabeth Pinkerton Memorial award is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. Elizabeth (Lizzie) Pinkerton (1984 – 2010) had … Read More
TSA Telehealth Nurse
It was announced today that TSA is one of 11 patient organisations that will receive funding support for a part-time telehealth nurse under the Patient Pathways program developed by the Centre for Community-Driven Research (CCDR). This pilot project is intended … Read More
New epilepsy treatment added to pharmaceutical benefits scheme
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
Australian research into TSC and autism continues
Dr Bec Mitchell continues her valuable work on the DOTS* study that is increasing our knowledge of the risk factors for autism in children with TSC and of possible interventions for children at risk of autism. Dr Mitchell is a … Read More
Dr Orli Wargon receives 2018 Elizabeth Pinkerton Memorial Award
Dr Orli Wargon, a paediatric dermatologist at Sydney Children’s Hospital, is the recipient of the 2018 Elizabeth Pinkerton Memorial Award. This award is given annually by Tuberous Sclerosis Australia to a health professional in recognition of their efforts to improve … Read More
Understanding TAND: TSA’s 2018 Education Events
TSC Associated Neuropsychiatric Disorders: including learning, behaviour, autism and anxiety
These educational events are for people with TSC, their family members and interested health professionals. TSA is also working with our TSC Professionals Network members to hold events specifically for health professionals to increase their understanding of TAND.
Planned educational events in 2018:
ADELAIDE 26 AUGUST
BRISBANE 8 & 9 SEPTEMBER
SYDNEY 22 SEPTEMBER
New epilepsy treatment to become affordable for Australians with tuberous sclerosis
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
New webinar for health professionals
Leading TSC neurologist, Dr Darcy Krueger, has presented a webinar designed for professionals. It provides an overview of TSC diagnosis and genetics and more detailed information on managing SEGAs and epilepsy. Access the webinar today