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Rare Ordeal Drives Determination

Thursday 6th March / presented by Paul Hunt

Big diseases with bigger names are a concern to us all – but what happens when you have a condition and no one seems to be able to name it, let alone diagnose and help?

Susanna Wills-Johnson has experienced two different rare diseases – and is one of an estimated 1.5 million who lives with these conditions in Australia.

Kylie Sturgess spoke to her about what’s being done to promote a registry and develop a national framework – the National Rare Disease Plan – and how vital timely diagnosis, care and treatment is…

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