Rare Patient Voice

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Rare Patient Voice
Listing Overview

Rare Patient Voice, LLC was formed to provide patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services.

Several things led to the founding of Rare Patient Voice:

  • The increasing focus of the pharmaceutical industry on rare and orphan diseases
  • The realization by the pharmaceutical industry that they need to understand what patients and caregivers think about products
  • The need to recruit patients to help build patient registries in rare disease areas
  • And while the need is there for industry to talk with rare disease patients, the means have not been available. Current patient panels are really just large consumer goods panels who have been asked what conditions they have. The prevalence of rare diseases is so small, this approach can only provide a handful of rare patients.
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