Growing Up with Rare Disease Disability: The Realities for Siblings and Practical Approaches for Families and Carers

TSA wishes to thank Rare Voices Australia (RVA) and members of the rare disease community in Australia who helped in the development of this new program, designed to support rare disease groups and organisations to facilitate workshops with 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.  

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).  

The course materials, which are accessible to rare disease groups and organisations for free, are available on the RVA education portal.