Patient Empowerment Program: A Rare Disease Podcast

How to Think About ”Risk” Part 2


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Nano-rare diseases strip power from families and this often leads to hopelessness, anger, and dread. However, channeling these intense emotions to carefully navigate risk/benefit decisions is within one’s control.

n-Lorem is different than standard drug development settings. Every risk/benefit decision that n-Lorem makes is in the context of the individual patient’s symptoms, status, and needs. While we cannot promise benefit, we can promise that we will do our very best in the creation of an optimal medicine.

On This Episode We Discuss:

  • Risk/benefit decisions
  • n-Lorem is different
  • We cannot make promises
  • Communicating about risk
  • Perceptions concerning control
  • Exposure and risk
  • Compression
  • Omission
  • Timing
  • Official positions affect our perceptions
  • Anchoring and communicating risk

  • ...more
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    Patient Empowerment Program: A Rare Disease PodcastBy n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)

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