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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
    • In the News
  • 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
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • 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 Amanda and I’m an RPV Patient Panelist who’s overcoming a bleeding and platelet disorder.

Thanks for taking the time to watch my video. I was asked why I joined Rare Patient Voice and how long I've been a member. I've been a member for probably about four years. I joined because I want my voice to be heard. I need my opinions to matter. Getting paid to do surveys is a bonus. It's a little extra in your pocket for making your opinion matter. Sometimes the surveys are five minutes. Sometimes, they're three days, but they compensate well, it's worth the effort, they're courteous about working with your work schedule. If you work outside the home, there's nighttime hours, daytime hours. It's worth taking a look at.

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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

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