Growing Up with Rare Disease Disability: The Realities for Siblings and Practical Approaches for Families and Carers
Course Overview:
This program is designed to help rare disease groups/organisations to facilitate workshops that support parents and carers to recognise, understand, and respond to the realities siblings may face when growing up in a family with a child living with rare disease disability.
Important: workshops do not provide advice or recommendations on mental health and wellbeing. Individuals are encouraged to consult with relevant health professionals when accessing or utilising mental health and wellbeing resources.
About This Course
This program contains guides and information to help rare disease groups/organisations to facilitate Growing Up with Rare Disease Disability: The Realities for Siblings and Practical Approaches for Families and Carers workshops.
The goal of the workshop is to empower parents and carers. It focuses on the experiences of Australian siblings of individuals living with rare disease disability and contains practical approaches for families and carers.
This program was developed collaboratively by Tuberous Sclerosis Australia (TSA) and Rare Voices Australia (RVA) as part of the Rare Disease Disability Project (the Project). The Project is funded by the Australian Government through the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).
Completion of the course should take about 1.5 hours.
