Health care of adults living with TSC
Thank you to everyone who joined our discussion last week on the health care of adults living with TSC. It was great to see so many of you on the call and thank you for all your excellent ideas and … Read More
Today is Purple Day!
Learn more about Purple Day – an initiative dedicated to raising epilepsy awareness, dispelling myths, and increasing support to those affected.
Join TSA’s fundraising committee
TSA is looking for people to join a newly formed Philanthropy and Fundraising committee. This is an opportunity to use your experience, connections and benevolence to help TSA grow our fundraising program. TSA rely on fundraising and donations to run … Read More
Funding for Abdominal MRI – Please lend your support by sending an email
In October’s Reach Out we mentioned that TSA is working with others to advocate for a medical benefits scheme (MBS) number for abdominal MRI for TSC screening, which is the internationally recommended screening test. If successful, this would make abdominal … Read More
Would you like to be part of the RArEST Project?
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
Support our work this #GivingTuesday
Today is #GivingTuesday, a global generosity movement, unleashing the power of people and organisations to transform their communities and the world.
Good news for people in Australia going through IVF
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
Research into experiences of caring for a child with complex needs
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
Help TSA Advocate for Abdominal MRIs
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
Have you met Abby?
“Meet Abby” is an introductory video which explains Tuberous Sclerosis Complex (TSC) and the work that TSA does to support those living with this condition.