Wes Michael, President and Founder of Rare Patient Voice, discusses the company’s main objectives as well as a recent milestone they have reached.
As Mr. Michael explains, Rare Patient Voice is a market research company. Their goal is to give rare disease patients in particular a chance to communicate their ideas, experiences, and concerns with companies creating products and services for these patients. After some time, Rare Patient Voice expanded its reach to non-rare patients upon realizing that these individuals also felt unheard or misunderstood by the companies trying to help them. One of the ways Rare Patient Voice accomplishes this goal is by paying patients and caregivers to fill out surveys expressing their individual opinions and/or concerns. Recently, the company has reached the milestone of having paid 7 million dollars to patients and caregivers. Though patients frequently note that they do not take part in these surveys for the money, Mr. Michael acknowledges that many patients are on disability or have had to reduce their work hours either because of their disease or in order to be a caregiver, and in this regard, the money is important.
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