TAND (TSC-Associated Neuropsychiatric Disorders) affect up to 90% of people living with TSC, causing symptoms such as autism, anxiety, depression, behavioural issues, and psychosocial difficulties. These symptoms often have the greatest impact on individuals and families but frequently go unrecognised, untreated, or poorly managed. The TANDem app is a groundbreaking tool designed to improve awareness, identification, and management of TAND ...
TSA (Tuberous Sclerosis Australia)
TANDem App – Awareness and Training Program
GOAL
$11,100
Australia > National / Multi-state > Metro and Regional
Field of Interest
- Health/wellbeing and medical research
- Individual/family services and support
Target Population
- People with a disability, illness or disease
- Not applicable
TSA (Tuberous Sclerosis Australia)
For over 40 years TSA (Tuberous Sclerosis Australia) has been Australia’s go-to resource for information, advice and support for families living with TSC (Tuberous Sclerosis Complex) . We help create a better life and more hopeful future for everyone affected by TSC by providing information, support and connection. TSA is dedicated to creating a better life and more hopeful future for everyone in Australia affected by TSC by providing knowledge, support and connection. Some of the things we do with and for our TSC Community include develop and publish TSC-specific resources, run a telehealth nurse service, organise information events, help our Community find TSC health care professionals, connect members of our TSC Community and publish monthly e-newsletters.
TSA works closely with our Medical Advisory Panel and other health care professionals and researchers in Australia and around the world to discover new treatment and screening options and search for a cure. We believe in the power of community and that we are stronger together.
We raise awareness of TSC and advocate on issues such as access to health care and new treatments. Our voice is amplified by working with peak bodies such as TSC International (of which we are a founding member) and Rare Voices Australia.
Early intervention is critical to long terms outcomes, so TSA performs all of these activities to help achieve a brighter future for everyone living with TSC.
Project Summary
TAND (TSC-Associated Neuropsychiatric Disorders) affect up to 90% of people living with TSC, causing symptoms such as autism, anxiety, depression, behavioural issues, and psychosocial difficulties. These symptoms often have the greatest impact on individuals and families but frequently go unrecognised, untreated, or poorly managed. The TANDem app is a groundbreaking tool designed to improve awareness, identification, and management of TAND symptoms.
The launch of the new TANDem app, due for 2025 release is one of the most significant developments for the global TSC Community in decades. There is a chronic shortage of health care professionals with knowledge and expertise in TAND and a critical lack of evidence-based interventions to help people manage the many issues that TAND presents.
This innovative new app, which has been scientifically validated during its development, will include a self-administered checklist to help patients and caregivers identify which TAND symptoms are most evident and a toolkit of practical, evidence-based, clinically tested interventions and management strategies. The TANDem app will also enable people living with TSC and their caregivers to easily complete essential screenings at the recommended intervals, facilitating timelier access to TAND care.
The app has been developed by the TANDem team (see https://tandconsortium.org/about/), an international consortium of health care professionals and TSC patient organisations who are working collectively to tackle the many challenges of TAND
Project Outcomes
This project is expected to raise awareness of the new app with members of the TSC Community in Australia – including health care professionals and patients; give patients access to a self-administered TAND checklist, which will help them identify which TAND symptoms should be prioritised in their personal circumstances, for the first time;
share the TAND toolkit which will provide evidence-based practical interventions and strategies to help people living with TSC and their caregivers minimise and manage the impacts of TAND; provide a holistic perspective on TSC, focusing not only on the physical symptoms of TSC but also on enhancing mental health, quality of life and overall well-being.
Budget Breakdown
TOTAL BUDGET: $11,100
EXPENSES
| Expense item | Amount |
|---|---|
| Awareness raising about the new app | $3,750 |
| TSA Nurse to prepare and deliver the training to members of our TSC Community | $5,600 |
| Promoting the training to our TSC Community | $1,750 |
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