Consumers and Co-design

The Rare Care Centre firmly believes that genuine impact cannot be achieved without authentic voices guiding the way.

That's why stakeholder consultation is one of the strategic and operational foundations, to ensure lived experience and expertise informs the design of everything the Centre does.

Our lived-experience reference groups:

• Consumer Reference Group: comprised of parents/carers with lived experience of caring for a child with a rare or undiagnosed disease in WA and who have informal links with other families and patient organisations.
• Youth Reference Group: A group of young people aged between 12-17 who have a rare or undiagnosed disease and have informal links with other young people in WA.

Apart from the reference groups, the Centre continues to consult with a broader base of RUD patients, families and wider stakeholders through our various projects.