The Australasian Tuberous Sclerosis Society (ATSS) is a volunteer run organisation based in Sydney, Australia. The committee works hard to align ATSS to its vision, mission and values.
When doctors make a diagnosis of TSC it comes as an enormous shock to the family. Most people have never heard of the condition and they feel bewildered, isolated and often devastated. ATSS provides support through information and contact with other families affected by TSC. ATSS members include hundreds of families, in addition to many interested professionals from the medical, caring and education fields. ATSS is a founding member association of Tuberous Sclerosis International (TSI).
ATSS activities are in three areas:
Improving TSC Management and Treatment
Our family conferences provide opportunities for education and contact with medical professionals with expertise in treating and managing TSC. Through the journal Reach Out, the ATSS website, printed publications and through informal contact, information is shared between ATSS members. ATSS also supports various research projects and professional education.
Peer Support
Through contact and friendships between ATSS members, ATSS facilitates our members’ support networks. These networks are formed and strengthened by attending ATSS events and through contact with ATSS regional contacts throughout Australia and New Zealand. The ATSS committee all deal with TSC on a daily basis. Some are affected with TSC themselves, and many have a family member with TSC.
Raising Awareness of TSC
ATSS aims to raise the general awareness and understanding of the condition through publicity. For example, an annual lecture to medical students at The University of NSW attended by a TSC family gives future doctors a first hand experience of the condition.
ATSS receives no ongoing funding relying on donations from members for operating costs. ATSS also receives support for specific projects from corporate fundraisers and holds its own fundraising events.
ATSS Strategic Plan
The activities and priorities of ATSS are summarized in the 2008 strategic plan. If you or your organisation can contribute to ATSS activities, please contact us.
