Help make medical treatment accessible for people with SEGAs

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Early in 2012, Afinitor was approved by the Therapeutic Goods Administration (TGA) for: “the treatment of patients with subpendymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis (TS) who require therapeutic intervention but are not candidates for curative surgical resection.”
Unfortunately, the medicine can cost more than a thousand dollars per month for just one patient. Because the treatment is ongoing, Afinitor is very expensive for the patient or their hospital.
Comments form TS affected families would be welcomed by the Pharmaceuitcal Benefits Advisory Committee who make decisions about whether to list the medicine on the Pharmaceutical Benefits Scheme. Your comments need to be submitted by 10th October 2012.

Riding the TSC Wave: The 2011 ATSS Family Conference

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More than 120 people, from every state and territory of Australia as well as New Zealand, gathered in Sydney in October for the 2011 Family and Medical Conference. Highlights included the high calibre of international and local speakers, the varied and comprehensive programme and the opportunities for all attendees to share experiences.

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