Rare Diseases NSW world class researchers' model of care

Did you know that Luminesce Alliance, supported by NSW Health, coordinate and integrate precision medicine research for children with rare diseases, as well as cancer and neurodevelopmental disorders?

In the lead up to the annual International Rare Disease Day 28 February, we acknowledge the significant efforts of Luminesce Alliance researchers, clinicians and patient advocates, many of whom are with Rare Diseases NSW.

Their world-class expertise and collaborative approach, led by NSW Rare Diseases Chair Professor Adam Jaffe and including Dr Elizabeth (Emma) Palmer (pictured with Adam), A/Prof Paula Bray, A/Prof Mark Cowley and Dr Kate Hetherington, is progressing a unique research enabled model of care and translational impact.

Their contributions are increasingly significant for the more than 400,000 Australian children with rare diseases, given approximately 95% of 7000 known rare diseases have no treatment and are not studied by medical researchers.

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