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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

PAM is Here!

July 13, 2019 Wes Michael

We are super excited to announce the launch of our new Proposal Automation Module – PAM! Clients can now enter their project specs – disease type, project methodology, length of … READ MORE

Filed Under: Business

Get to Know Hemophilia

July 7, 2019 Wes Michael

The first patients we ever worked with were those with Hemophilia. We go to a lot of wonderful hemophilia events such as the National Hemophilia Foundation annual conference and the … READ MORE

Filed Under: Business, Community, Hemophilia, Patient

We now have more health conditions!

June 27, 2019 Wes Michael

Many clients know we list our patient panels and counts on our website: rarepatientvoice.com/for-researchers/patient-panels/ There are so many diseases and health conditions. In the rare disease community, we talk of … READ MORE

Filed Under: Business

Does Rare Patient Voice Just Recruit Rare Patients?

June 24, 2019 Wes Michael

This is a great question. With a name like Rare Patient Voice, we just recruit rare patients, right? No! When we started Rare Patient Voice 6 years ago, we just … READ MORE

Filed Under: Business

Get to Know Macular Degeneration

June 23, 2019 Wes Michael

I was able to attend a Macular Degeneration event yesterday in Charlottesville, VA. It was one of several put on by the Macular Degeneration Association across the country, a non-profit … READ MORE

Filed Under: Business, Community, Get To Know, Patient

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Latest Blog Posts

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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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