Tuberous Sclerosis Australia Annual Report 2015-16

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Our 2015-2016 Achievements Your support enabled us to 1. Improve health services for people with TSC 1. We brought together 35 TSC expert health professionals in the medical stream of the 2015 Australian TSC Conference. They were joined by overseas TSC experts to share latest research, treatment approaches and future collaborations. 100% of our medical stream attendees said they learnt something at the conference that has changed the care they provide to their patients with tuberous sclerosis they would share their new knowledge with their colleagues they would recommend the conference to others Our next goals Formally recognise our TSC Clinics in Australia and continue our work supporting the development of new multi-disciplinary models of health care for people with TSC Further improve access to topical mTOR inhibitor treatment for all Australians who need it Fill gaps in the TSC Professionals Network working towards having full coverage around Australia, across specialists Enrich the TSC Professionals Network with email communications and an online education event 2. Our co-sponsored session at Westmead Children’s Hospital’s seminar brought more than 150 paediatricians up to date with best practice in diagnosing and managing TSC. Dr Elizabeth Thiele from The Herscot Centre for TSC. 3. Our TSC Professionals Network has grown to 40 members around Australia and across many medical specialties. 4. Fifth annual Elizabeth Pinkerton Memorial Award given to Dr Anne Halbert, dermatologist in Perth, recognising her pioneering research and advocacy work with topical mTOR inhibitor treatment for TSC facial angiofibromas. Conference sponsors 5. Along with Queensland families, we advocated for funding of topical mTOR inhibitor medicine by QLD Health. We look forward to announcing good news soon. 6. We represented the views of patients with TSC in consumer consultations on Medicare Benefits Schedule review Photo: Dr Anne Halbert with our WA Regional Contact, Sue Williamson Tuberous Sclerosis Australia 4
2. Publish and promote TSC information Your 2 day conference was more informative than living every day with TSC. Doctors only ever told us the need to know when we needed to know it. We have a greater understanding about Kidney AML’s and LAM. Dr Lisa and Dr Elizabeth were AMAZING Thank you for having them there. - Family stream attendee 1. The 2015 Australian TSC Conference’s family stream was attended by 91 delegates. Over 20 sessions covered various aspects of life with TSC and provided opportunities for people with TSC and their family members to ask questions from Australian and overseas experts. 100% of our family stream attendees said the meeting improved their understanding of TSC they will share something you have learnt with someone who was not at the meeting would recommend the conference to others 2. Over seven hours of video recorded sessions from the conference have been added to our TSC information resources. The most watched videos by the TSC community so far are: understanding the genetics of TSC; the less common signs of TSC; and future directions in TSC research. 5. A new surveillance guidelines summary makes these clinical guidelines easier to understand and has received great reviews by TSC families and health professionals. We have also distributed hundreds of TAND checklists to improve screening for various mental health, learning and behaviour challenges that people with TSC may experience. 6. We published two issues of our magazine, Reach Out. These included stories from people with TSC and their families, research news and information about upcoming events. Feature articles provided new information resources on the National Disability Insurance Scheme and new medicines for TSC (mTOR inhibitors). 7. We continued to share balanced and accurate TSC information through social media and our monthly email newsletter. Our next goals Deliver online education events for the first time, improving access for people in regional areas to high quality TSC information. Continue to improve our online and printed TSC information, responding to the needs of the TSC community. 3. Our information day in Brisbane with Lady Cilento Children’s Hospital and Epilepsy QLD was attended by 40 people and included sessions on epilepsy, development, genetics and kidneys. 4. Our TSC awareness cards provide people with TSC a simpler way to explain TSC. Photo: Bridget from ACT. 5 Tu
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Page 3: President’s Report Bringing toget
Page 7 and 8: 5. Ensure sustainable funding 6. Gr
Page 9 and 10: Our financial results Overview (con
Page 11 and 12: Financial statements Balance Sheet

Tuberous Sclerosis Australia Annual Report 2015-16

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