Empathy not Sympathy: Living with a rare disease

Living with a rare disease brings a particular set of challenges, often underappreciated by the health system, which can severely affect quality of life.

The author(s)

  • Eleanor Tait Ethnography
  • Lucy Neiland Ethnography
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There is no single template for a 'rare disease patient experience' and in our research we have met patients exhibiting everything from acute vulnerability and desperation to astonishing resilience and tenacity. However diverse people's experiences are, the unifying quality of 'rarity' means that commonalities exist.

Written by Ipsos' experts in Healthcare Ethnography, this article explores the common themes observed when researching patients living with a rare disease; from the battle for a diagnosis to the burden of managing others. It highlights the importance of empathy when seeking to understand patients who can often feel isolated and unseen. 

The author(s)

  • Eleanor Tait Ethnography
  • Lucy Neiland Ethnography

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