Clare’s Story I am really proud to present this series of sibling stories for this issue of Reach Out. It has been an honour to interview each sibling and listen to their stories, their strength and their kindness. Each day … Read More
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Oscar’s Story As told by his mum Kate in conversation with TSA volunteer Todor Arsov “Oscar was diagnosed with a metastatic renal cell carcinoma and the alarm bells went on! We were quite shocked … It sounded like there wasn’t … Read More
Not everyone with TSC will have a disability. But for many that do their needs are complex and the NDIS brings major change to the way that disability services are funded and provided in most parts of Australia. At the … Read More
Read our information page on mTOR inhibitor medicines used in TSC Ava’s experience with mTOR inhibitors Joelle, Ava’s Mum, Western Australia Ava is ten and has tuberous sclerosis complex (TSC). She loves gymnastics, drama and horse riding and is generally … Read More
a team of health care specialists who are here to assist you to take control of your health before you make the move over to the adult health system. Trapeze is the specialist transition service for The Sydney Children’s Hospitals … Read More
Read about the financial assistance available to help people with TSC For us not much is available. We only have access to the carers allowance and it doesn’t cover a lot. Our daughter isn’t “bad enough” to get the carers … Read More
A project of Australia Post,Go Digi is a national digital literacy project, including guides on various topics and face to face training. One guide is specific to health and may be especially useful to people with TSC, How to find … Read More
Australia’s first magazine for children with special needs! Source Kids is a free magazine distributed throughout Australia and is also available online. The magazine is a ‘source’ of information about education, health and nutrition, travel, sport, safety, therapy, technology, grants … Read More
Ability Links is a new service in NSW for individuals with a disability and their carers. It provides people with a locally based first point of contact to support people to access supports and services in their local communities.
The Centre for Genetics Education provides high quality information on genetics, including genetics disorders. The Centre is a NSW state-wide education service dedicated to preparing health professionals who are non-genetics trained with the skills and knowledge to manage the impact … Read More
The DermNet NZ presents authoritative facts about the skin for consumers and health professionals in New Zealand and throughout the world. It is written and reviewed by dermatologists, other health professionals and medical writers. Access to DermNet NZ is free … Read More
Kalparrin is a not-for-profit organisation available to support any family member or carer of a child with a disability or special need. Their purpose is to make a positive difference to the lives of families and carers of children with … Read More
The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria … Read More
Rare Voices Australia is Australia’s national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA works … Read More