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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

Meet The Patients

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June 13, 2019Meet The Patients, Caregivers, Multiple Sclerosis, English

My Caregiver Enables Me To Live A Great Live

Hi everybody, John, Rare Patient TV. Well, living life with a rare disease is hard enough. But lot of times, it’s the caregivers. They are the inspirational force in allowing ... READ MORE

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By Wes Michael0
June 7, 2019Meet The Patients, HUNTINGTON'S DISEASE, English

Meet RPV Panelist Anthony

Hi, my name is Anthony Stoecker and I first heard about Rare Patient Voice when I was at a Huntington’s disease conference. And, um, I signed up for it because ... READ MORE

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By Wes Michael0
June 7, 2019Meet The Patients, Multiple Sclerosis, English

Meet RPV Panelist & MS Patient Kendra

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By Wes Michael0
June 7, 2019Meet The Patients, Multiple Sclerosis, English

Meet RPV Panelist & MS Patient Karen W

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By Wes Michael0
June 7, 2019Meet The Patients, Hemophilia, English

Meet Rob, RPV Panelist & Hemophilia Patient

Hey, so I’m Rob. I’m going to talk a little about my experience with Rare Patient Voice. Um, it’s been a really good experience. I like doing the surveys because ... READ MORE

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By Wes Michael0
June 7, 2019Meet The Patients, Caregivers, English

Meet RPV Panelist and Caregiver Julie R.

Hi, I’m Julie. I’ve been a member of Rare Patient Voice for over four years. And what comes to mind when I think about Rare Patient Voice is all the ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Multiple Sclerosis, English

Christian

My name is Christian and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis How does Rare Patient Voice fit into your life regarding support groups with others who understand/share ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Hemophilia, English

Kristopher

My name is Kristopher and I’m an RPV Patient Panelist who’s overcoming Hemophilia. I really like taking the surveys because I feel like I’m making an impact. I’m able to ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Multiple Sclerosis, English

Keith MS

My name is Keith and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis My choice today is to not be afflicted by MS but to live with MS. To ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Kugelberg Welander Disease, English

Jessica

My name is Jessica and I’m an RPV Patient Panelist who’s overcoming Kugelberg Welander disease I have spinal muscular atrophy type 3, also known as Kugelberg Welander disease. I do ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Pulmonary Hypertension, English

Barbara Pul Hyper

My name is Barbara and I’m an RPV Patient Panelist who’s overcoming Pulmonary Hypertension Hello. My name is Barbara Thompson. I was diagnosed with pulmonary hypertension in December of 2002. ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Sickle Cell Anemia, English

Charly Blakk

My name is Charly and I’m an RPV Patient Panelist who’s overcoming Sickle Cell Anemia Hey, it’s Charly. Welcome to another episode of Rare Patient Voice TV. The reason for ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Multiple Sclerosis, English

Stephan MS

My name is Stephan and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis The online surveys are pretty easy and they let you be specific about your answers because ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Muscular Dystrophy, English

Lisa Huntley WS

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 ... READ MORE

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By Wes Michael0
May 28, 2019Meet The Patients, Muscular Dystrophy, English

Jennifer MD

My name is Jennifer and I’m an RPV Patient Panelist who’s overcoming Muscular Dystrophy. Hello. I am Jennifer, and I live in Maryland. I have been a member of Rare ... READ MORE

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By Wes Michael0
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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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