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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping Patients and Caregivers Voice Their Opinions

Jennifer MD

May 28, 2019 Wes Michael

My name is Jennifer and I’m an RPV Patient Panelist who’s overcoming Muscular Dystrophy.

Hello. I am Jennifer, and I live in Maryland. I have been a member of Rare Patient Voice for a couple of years now, and I really like it. For someone considering joining the panel, I would say go for it. You’ll learn a lot of things that maybe you were unaware of, and sometimes make a little money doing surveys, which who doesn’t like a little money?

I have a type of muscular dystrophy called spinal muscular atrophy type 2. The things I like about being on the panel is that I get to learn about possible new treatments that are in the pipeline for my condition. I also like being able to share my views as an older person with a form of muscular dystrophy. A lot of times, ad campaigns and such are tailored for parents of children, and some of us are adults. So thank you.

Filed Under: Meet The Patients Tagged With: Muscular Dystrophy

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