Amplifying the Patient Voice in Rare Disease Access

Rare disease patients are organising like never before, turning up the publicity volume and becoming ever more active in driving cures in the lab and even the boardroom.

As a person living with a rare disease and a professional in healthcare communications, I occasionally have moments of disconnect. Such as when I began this article.

Let me explain. In Thinking Fast and Slow, a mental model proposed by Daniel Kahneman, system 1 thinking is characterised by ‘emotive, instinctive’ thought patterns, while system 2 thinking utilises a deliberate, rational frame of mind. We spend more time in system 1 thinking than most of us care to admit.

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