Annual Report of Tuberous Sclerosis Australia 2016/17

The impact of your
support on improving
health care
Over the past year TSA has continued to work in partnership with government, medical
specialists, researchers, and our international counterparts to improve healthcare for all
individuals living with TSC.
Advisory Committee (PBAC), who make decisions on listing medicines on the pharmaceutical
inhibitor medicines since their PBS listing in 2013. Australian government funding of this medication
to treat TSC tumours in the brain and kidneys is improving lives.
“The PBAC thanked Tuberous Sclerosis Australia for the balanced and helpful advice provided in their
consumer comment. The PBAC noted that Tuberous Sclerosis Australia spoke of the value of the PBS
listing of Everolimus for people with TSC while also noting limitations in the use of this medicine.”
We continue to work with our valued TSC clinics around Australia. We partnered with Lady Cilento
Children’s Hospital in Brisbane to hold a specialised clinic for parents of younger babies with TSC. This
event provided them with a safe space to share
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their challenges and fears and form connections
with each other. TSA now hosts an online group
for these parents to foster these connections.
Australian
projects presented
at International TSC
Research Conference
We also celebrated the launch of the Adolescent
and Young Adult clinic at the Bright Alliance,
part of Sydney Children’s Hospital.
We collaborated with the TSC clinic team and
the hospital pharmacy to have treatment for
the skin signs of TSC funded by the Queensland government. Combined with hospital funding in
Melbourne and Perth, many more Australians can access this cream at minimal cost.
Our TSC Professionals Network includes 40 medical
specialists around Australia with experience in TSC. This
allows people with TSC to seek out doctors with up to
date knowledge and experience. We will continue to
grow and strengthen this network in the future.
Four Australian TSC researchers attended the 2017
International TSC and LAM Research meeting in
Washington DC, USA. Their work reported on children
with TSC to better understand brain tumours in TSC
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Australian sites in
international TSC
research collaborations
and the importance of early intervention. Australian research teams continue to collaborate with
international studies into early childhood development, epilepsy treatment options and the best ways
to manage skin tumours in TSC.
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