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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

Lessons from the Tortoise and the Hare

August 22, 2020 Wes Michael

I’m sure you all remember the story of the tortoise and the hare. The hare is much faster than the tortoise and he gets off to a much faster start … READ MORE

Filed Under: Business, Community, Patient

We’re still recruiting patients even during Covid

August 9, 2020 Wes Michael

Many of you may know that we recruit many of the patients and caregivers in our Rare Patient Voice patient panel by going to patient events like conferences, walks and … READ MORE

Filed Under: Business

Let’s Name our Zebra Mascot – but not Zebra McZebface!

July 29, 2020 Wes Michael

Thanks for the tremendous response we’ve received to help us name our Zebra mascot! We’ve received hundreds of names. And not just the names, but great thinking behind the names. … READ MORE

Filed Under: Business, Community, Patient

How LinkedIn works for Rare Patient Voice

July 21, 2019 Wes Michael

Every conference we go to, I get a lot of people telling me, “I see you all the time on Linked In!” I sometimes wonder if that is a good … READ MORE

Filed Under: Business

Get to Know: ALS

July 13, 2019 Wes Michael

Amyotrophic Lateral Sclerosis, or ALS, has been gaining a lot of recognition over the past few years. It used to be known as Lou Gehrig’s Disease. But now most people … READ MORE

Filed Under: Business, 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

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

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