Helping you navigate care in Perth, Western Australia. 

System Navigation 

System Navigation Support for the CTDNA Community in metro area of Western Australia 

Connective Tissue Disorder Network Australia (CTDNA) has partnered with Neuromuscular WA to deliver a System Navigation service for people living with heritable connective tissue disorders across the metro area of Perth, Western Australia. This service provides personalised support to help individuals and families better understand, access and coordinate the services they need across health, disability and community systems.

This partnership builds on a strong foundation of evidence and community need. In 2020, a community survey identified a significant gap for people living with rare, genetic and undiagnosed conditions in WA, particularly a lack of coordination of information and care across the system. In response, Neuromuscular WA undertook extensive research, co-design and resource development over 12 months, supported by a community consultation committee. This led to the launch of a pilot System Navigation program in May 2023.

Following the success of this pilot, the program secured an additional three years of funding through the WA Department of Health which enables the service to continue, strengthen and expand and as part of this expansion, and following consultation with a range of rare disease communities, CTDNA was identified in partnership to extend navigation support to people living with heritable connective tissue disorders.

Through this partnership, the CTDNA community in Perth metro area can now access tailored navigation support designed to:

• help make sense of complex systems and pathways
• connect with appropriate services and supports
• improve coordination of care
• reduce the burden on individuals and families navigating systems alone

This collaboration represents an important step toward improving equity of access and building a more connected, responsive system for people living with rare disease in WA.

As a part of these services, you will be assigned a dedicated navigator who will help you find the right support, services and care when you need it most. No cost, just real help.

To get started, please complete this short referral form here: System Navigation Referral Form Heritable Connective Tissue Disorders