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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

How we use your information

Your privacy is important to us!

Rare Patient Voice will always protect your privacy. We will not sell your personal information or share any information without your consent.

What information do we collect?

During the registration process, we gather personal information (name, address, age, etc.). After registration, we ask our members to provide us with additional information regarding their condition. We do this so we can send members invitations to participate in research that best corresponds with their current status and interests.

How we use your information

We use your email address to send you invitations to participate in research and to contact you with messages regarding member information. We use your email address to send gift cards, or your postal address to mail honoraria payments.

We never link or associate any of your identifying information with your responses obtained during the research.

By signing up with Rare Patient Voice, you are providing your permission for Rare Patient Voice to collect and store information about you.

For further details, please refer to our Privacy Policy. Once you register you will be opted in to the Rare Patient Voice community, and you will be eligible to receive invitations to participate in one or more research studies. Invitation criteria vary by study.

How do I qualify?

Rare Patient Voice is always looking for patients and caregivers to join our community. Most health conditions will qualify. If you are interested, sign up and we will let you know if you qualify. Or email us at wes.michael@rarepatientvoice.com to tell us the disease category, and we’ll let you know if you qualify.

Sign up now!

Latest Blog Posts

  • RPV Basics
  • How much detail to reveal in survey invitations?
  • Impact of the Covid-19 Pandemic on Rare Disease Patients and Caregivers
  • Join Rare Disease Day 2021
  • Is Telehealth Here to Stay?

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What’s New at Rare Patient Voice?

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

For Patients

  • Learn about us
  • Vision, Mission and Core Values
  • Sign up to participate
  • Find us in the community
  • Read our blog for patients
  • Privacy Policy

For Related Groups

  • Are you an advocacy group for a rare disease?
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  • Read our blog for businesses

        
   

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