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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping Patients and Caregivers Voice Their Opinions

Stephan MS

May 28, 2019 Wes Michael

My name is Stephan and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis

The online surveys are pretty easy and they let you be specific about your answers because they only give you so many answers. You know, A B C or D. Whereas on the video answers, and surveys, you can actually use your own input. They ask a question and they let you ramble and tell you the answer. I enjoyed both of them actually. But there’s the only thing the difference being is that, with a video, you actually have to show your face. –Laughing–

They don’t divulge any personal information of yours. It’s completely confidential. It helps with the study of the diseases and the conditions that we have. You do get a perk sometimes of getting a financial assistance which has helped me out a lot in a few situations. And just for the sure, I’m sure sorry, the “sheer”, altruism of it all, to help fellow man. I mean, with the questions you answer, help us. They let people in the pharmaceutical industry, physicians, nurses, all the divisions of the whole mess that we’re in which you know, what I’m talking about by being in a mess. Let’s them know how we really are. We have a voice. So, I would say, please join.

How do I like participating in these surveys? I like it a lot. –Laughing– They make it very easy. The questions pertain to all the problems I’ve been having and I enjoy doing them. I mean, they’re very at the point of what my disease is, which is, I appreciate knowing that people are actually interested in the medications in the disease and the problems that I have in my life. The questions seem to be to the point. I enjoy talking to people, so I have no problem answering any questions and I’ve never ever had any problem with security or anything like that.

Filed Under: Meet The Patients Tagged With: Multiple Sclerosis

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