Our strategic plan 2012-2014 outlines our top priorities and how we are going to make them a reality. Our new strategic plan will be formulated in 2015.

If you would like to get involved, there are many ways you can help. If you have any feedback, don’t hesitate to contact us.

Vision, Mission, Values

TSC families are empowered, through access to information and support

Our Mission:

  • Provide access to current information and resources
  • Help TSC families build relationships and support networks
  • Ensure best practice management and care for TSC affected people in Australia and New Zealand

Our Values:

  • Family Focused: We understand that TSC affects the whole family.
  • Diversity: We respect diversity and recognize everyone’s unique experience and contribution.
  • Excellence: Our services and activities are of high quality.
  • Openness: Our decision making and communications are clear and transparent.
  • Independence: We will maintain our independence and be accountable to ATSS members.
  • Partnership: TSC is a diverse condition. We will collaborate with other organisations and individuals to achieve our vision.
  • Geographically equitable: We acknowledge that TSC affected families live throughout Australia and New Zealand, in urban and rural areas. We will attempt to make our services accessible.

Strategic Priorities

We have defined four priority areas:

Increase information for families
  • Provide a checklist for TSC affected families, especially for the newly diagnosed
  • Focus on information that will empower individuals and families to be their own advocates
  • Enhance the information provided by the ATSS website, especially more information specific to local services
Provide more comprehensive support services
  • Build up local support networks
  • Assist regional coordinators in their role e.g. how to packs
  • Advocate for multi-disciplinary team care in each state, for both children and adults
  • Offer telegroup counseling, providing support for geographically isolated families
  • Understand the needs of adults mildly affected by TSC
Expand and Enrich ATSS Membership
  • Expand membership
  • Increase our knowledge of TSC affected people in Australia and NZ
  • Increase communication with members
  • Increase grassroots financial support
Encourage medical expertise in TSC
  • Establish the ATSS medical advisory board
  • Increase our knowledge of specialists with expertise and interest in TSC
  • Lobby to include TSC in medical school curriculums
  • Provide information tailored to general practitioners’ needs


We’ve defined a number of projects that we are seeking funding for. These projects are designed to address the strategic priorities. Most of these projects are awaiting funding to get started. Can you help?

  • Resource Directory: Our new web site that includes detailed information on TSC and a directory of resources to assist families living with TSC.
  • Reaching Out Programme: Taking our successful conference events to a different city each year, this programme will build up local networks of both families and professionals.
  • Promoting TSC Guidelines: Working with an expanded medical advisory group to promote revised guidelines for the diagnosis, surveillance and management of TSC.
  • Soft Landing: Expanding and enriching the support services offered to families, particularly those newly diagnosed with TSC.
  • Adults survey: To start addressing the needs of adults living independently with TSC, we need to increase our understanding of the challenges they face and how we can help. A family survey may follow.

These new projects are built upon the strengths of our ongoing work. This includes support offered to families via phone, email and facebook, publication of Reach Out twice a year, and regular educational and social events.