Rare Patient Voice, LLC was formed in 2013 in the USA to provide patients with rare diseases and their caregivers 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, LLC, 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.
In 2014 Wes met Peter Ziedins, a Canadian marketing research professional who was searching for cancer patients who would be willing to discuss their experiences. Their collaboration led to a partnership to extend Rare Patient Voice into Canada.
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 receive your rewards in a timely manner. 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
Canada currently lacks a national strategy for rare disorders such as the Orphan Disease Act in the US. Patients and caregivers play a vital role in clinical research into rare diseases. They can also contribute to progress by helping researchers understand their needs and how they are affected by their conditions.
Rare Patient Voice Canada is proud to help patients share their opinions and continue to improve medical products and services.