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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • Press Releases
  • For Patients
    • Study Opportunities for Patients and Caregivers
    • Sign Up to Participate
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Advocacy Groups
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
  • Videos
    • Meet The Patients
    • You Ask, We Answer
    • Get To Know
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping Patients and Caregivers Voice Their Opinions

My name is Lisa and I’m an RPV Patient Caregiver whose grandson overcomes Muscular Dystrophy

I participate in the Rare Patient Voice because I have a grandson who has muscular dystrophy, particularly Duchenne's Muscular Dystrophy. I like to do the surveys, because it helps me understand his disease.

New things are coming down the pipeline for his disease. It has given me a lot of hope, and a chance to connect with other patients and their caregivers. I found other people in my area that have children with rare diseases.

Reading everything that you hear and see on websites about children not able to walk after 12 and not living until their late 20s was kind of hard. But we've learned, through different websites and different communities, that things are changing. There are things down the pipeline. And people are actually working on this and trying to find something to help.

For anyone that has a child or has been diagnosed with a rare disease, I suggest very highly that you get involved with Rare Patient Voice. Not only do you get surveys and learn about new things that are coming down the pipeline, but they do give you an incentive for doing these surveys.

Doing the videos was very easy. You guys made it great, and accessible, and not hard at all. All in all, it was a wonderful experience. I enjoy anything that Rare Patient Voice has that comes to me. And I am always willing to be involved.

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Recent Patient

“I’ve had excellent interactions with the staff. The surveys are usually somewhat fun and feel like you’re actually helping someone or developing something new. They’ve always followed through on payment and I appreciate all the opportunities.”

Rare Patient Voice

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(410) 218-0527

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