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.
Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 30 years experience in marketing research, and more than 15 years in healthcare marketing research.
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.
Instead of a passive approach, Rare Patient Voice takes an active approach to meet patients at conferences and events. Our phone is always open to members. The more we can engage with patients, the more we can advocate for them and help their voices be heard.
We have learned that it is important to patients and caregivers to be able to give their opinion. It is also important to get your rewards in a timely manner. We are proud to have rewarded patients with over one million dollars since our founding! At Rare Patient Voice, we pledge to qualified patients and caregivers that we will:
- Send you the $5 gift card of your choice
- Send you your cash rewards within a week of when the study is completed
- Send you the $5 Amazon gift card within 2 weeks after patients or caregivers you have referred have signed up and qualified
Tremendous progress has been made in treating rare diseases since the passage of the Orphan Disease Act in 1983. Part of that has been the role that patients and caregivers have taken in clinical research. And part has been the voice of patients that has been provided through market research. Rare Patient Voice is proud to help patients share their opinions and continue to improve medical products and services.