A report from the McKell Institute has revealed an urgent need for a dedicated rare disease strategy in NSW, highlighting that more than 600,000 people with a rare disease are currently navigating fragmented and inconsistent care in NSW.

The landmark report, A Rare Kind of Care, examines the current landscape of rare disease policy in Australia, identifying gaps and providing recommendations aimed at ensuring all Australians living with a rare disease experience health equity.

Leading rare disease expert, Professor Adam Jaffe, who was on the report’s Expert Advisory Group and a panellist on the Rare Conversations Forum where it was launched commented.... read more.