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In this toolkit you’ll find videos and workbooks on:
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What families want researchers to know- with Hannah Pringle (mum of Ruby) and Angie Sari-Daher and Tamer Daher (parents of Eve)
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Compassionate communication- with Rachel Callander (mum of Evie & communication specialist)
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Models of meaningful consumer engagement- with Kris Pierce (lived experience & strategic lead for consumer & community engagement at Rare Diseases UNSW)
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Watch this space for upcoming resources to support planning and evaluating lived experience engagement in paediatric palliative care research.
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