Project Intern, Rare Diseases Family Support Program

Role Title: Project Intern, Rare Diseases Family Support Program

Organisation: Department of Health - Child and Adolescent Health Service

Internship Period: Summer (November - December)

Location: Nedlands

Role Description

The Rare Care Centre is working to establish a family support program for children and their families in Western Australia (WA) who live with a rare or undiagnosed disease (RUD). There are over 8000 known rare diseases, 70% of which have an onset in childhood. In WA, 63000 children have an RUD, enough to fill every seat at Optus Stadium. Rare and undiagnosed diseases impact the whole life of a child and their family, including physical and mental health, education, emotional health and wellbeing, welfare, social, and finances. Children with RUD often fall into the gaps between the sectors as they have complex care and support needs.
The purpose of a family support program will be to provide information, activities and peer-peer connections for the whole family in a facilitated setting. This program will involve collaboration with local non-government organisations, and other government sectors such as Department of Education, NDIS, Department of Communities and Primary Care. This project is to undertake desktop research in the form of a scoping literature review with local, national and international benchmarking of similar programs. The intern will also have access to a consumer reference group and youth reference group to add lived experience to their research. The information collected will be synthesised to provide options and recommendations about the format and key components for inclusion in the program.



Organisation Focus Areas

Organisation Mission

The Child and Adolescent Health Service is part of the Department and has a vision, values and strategic objectives for 2018 - 2023 to achieve healthy kids and healthy communities for Western Australia.