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In Rare Form

A total of 58 posts are filed under In Rare Form
A Christmas Story
  Caroline Harding decided to throw a Christmas party. She wanted to do it for the many young people, who like her son Columbus, had a rare… Continue Reading
Paying for Value
The drug industry long justified the pricing of its products on the basis of the high cost of R&D and the need for successes to offset the… Continue Reading
The Process of Being Alive
Claire Wineland laughs in the face of death. In fact, she’s made a bit of a career doing this on her own YouTube channel and through… Continue Reading
Learning the Meaning of Being Patient-Centric
Andra Stratton has never met a pharmaceutical company that wasn’t patient-centric, or at least one that didn’t declare itself to be so.… Continue Reading
Grace Science Foundation and Stanford University Create Biobank for Ultra-Rare NGLY1 Deficiency
Rare Daily Staff The Grace Science Foundation and a clinical research team from Stanford University have created an open source biobank of… Continue Reading
Understanding What Rare Disease Caregivers Face
Caregivers of patients with rare diseases are providers, protectors, and advocates. They have forced themselves to learn the language of… Continue Reading

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