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    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

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
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • 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 share their voices

I Have a Voice that Deserves to be Heard.

Are you a patient or caregiver with something to say?
Make your voice heard by participating in paid surveys, interviews, and online communities! Sign up and start talking to the right people. It’s free, and we accept rare and non-rare diagnoses!

Learn more about Rare Patient Voice

or

Sign Up Now!

Already a member? Update your profile here!
Learn about our Referral Program for individuals and advocacy groups.

alertbubbleV3

I Have a Voice that Deserves to be Heard.

Are you a patient or caregiver with something  to say?
Make your voice heard by participating in paid surveys, interviews, and online communities!

Sign up and start talking to the right people. It’s free, and we accept rare and non-rare diagnoses!

SIgn Up Now!

or

Learn more about Rare Patient Voice

Already a member?
Update your profile here!


Learn about our Referral Program for individuals and advocacy groups.


In addition to the US, we also recruit patients and caregivers for studies in Canada, the UK, Germany, France, Italy, Spain, Australia,
and New Zealand! Click here to visit the RPV global site.

Information for Patients & Caregivers

I am a

Patient or Caregiver

Information for Advocacy Groups

I am an

Advocacy Group

Information for Researchers

I am a

Researcher

We provide patients and caregivers the chance to voice their opinions

Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services.

Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 35 years experience in marketing research, and more than 20 years in healthcare marketing research.

  • For patients and family caregivers —we provide study opportunities to voice their opinions on medical products and services while getting paid for their time. Sign up here.
  • For patient advocacy groups —we partner with advocacy and support groups to increase donations.
  • For market research firms —we handle patient recruitment and help find the respondents and patient panels needed for marketing research.
  • For pharmaceutical and biotech companies —we provide the respondents and patient communities required to support business insight needs and all types of research studies.

Sharing My Voice

Hear patients and caregivers relate why sharing their voice is important to them, and what their experience with Rare Patient Voice has been.

Interested in sharing your story through a video recording? Sign up here.

Howard's Story
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Tessa's Story
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Rachel's Story
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George's Story
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Gayle's Story
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Ricky's Story
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Charity's Story
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Claire's Story
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Helena's Story
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Maria's Story
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Lindsey's Story
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Cheryl's Story
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Dan's Story
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Click the arrow to advance to more videos!

Why Sign Up with RPV?

Provide your input to improve products and services.

Help companies and researchers focus more on your disease.

Earn rewards for participating in interviews and surveys.

What are you waiting for? SIGN UP NOW!

Already a member? UPDATE YOUR PROFILE!

Patient Blog Posts

Client Blog Posts

Weekly Warrior: Meet Iris Ann

March 31, 2023

  “Hi, I’m Stacey, @thegutsycrohnie, and this is our beautiful daughter Iris Ann. We live on the beautiful island of Kauai and we love all things adventure. It’s scary to … READ MORE

Weekly Warrior: Meet Harper

March 24, 2023

“After four months of weekly appointments trying to investigate why Harper’s body seemed to be getting weaker by the day, we were given a terminal diagnosis of Spinal Muscular Atrophy … READ MORE

Meet Our Team: Chris Cooper, Senior Project Manager

March 16, 2023

Chris Cooper is a jack of all trades. He began working with Rare Patient Voice in 2018 doing video production and website management, and is now a Senior Project Manager. … READ MORE

Meet Our Team: Felecia Bryant, Project Manager

February 16, 2023

Hailing from Alabama, Felecia joined Rare Patient Voice in 2019 and is now a Project Manager. She feels strongly that her personal experience helps her to better meet the needs … READ MORE

Read More Blog Posts
Read More Blog Posts

RECENT FEEDBACK FROM PATIENTS, CAREGIVERS, AND CLIENTS

"I enjoyed being the "expert" and being able to share some of my son's story and our experience."

-- Abbie, patient

"I love the way this organization treats me."

-- Marian, patient

"I appreciate that you allow us to participate in these studies. The money helps to pay my co-pays and I am grateful."

-- Jane, patient

"It is satisfying to know I can do my part to help get feedback to companies about our rare disease."

-- Angela, patient

"I loved doing the survey - it was interesting and informative."

-- Karen, patient

"It was empowering to help inform people so that my learnings from this dreaded disease could help contribute to a greater good."

-- Nancy, patient

"I like voicing my opinion and getting paid for it is a needed bonus."

-- Michelle, patient

"There isn’t a more gratifying experience that I can think of that helps my own health and the health of others."

-- Indira, patient

"Working with the RPV team was a pleasure from start to finish. Each team member delivered flawless support, including during some necessary hand-offs from one to the next. They were instantly responsive and careful in explaining the process, the current status,
and the likely project completion date."

-- Glenna, Strategic Health Policy International

"I’m super impressed with your website and quote request process. I wish everyone made it this easy!"

-- Paula, Isani

"It was the first time for me working with Rare Patient Voice and even though it was a small study, you were super responsive! I really appreciate this and will for sure get back to you in the future."

-- Marta, Global Perspectives

"You guys really exceeded our expectations. We were thrilled with how this recruit went and will definitely continue to use your team for patient studies."

-- Courtney, InVibe Labs

"Thanks for all your help and I look forward to working with you again in the future!"

-- Catherine, Clarivate

"Thank you for the amazing work on this project that we had recruitment difficulties with another avenue. We'll definitely be back for any studies like this in the future!"

-- Mike, Charter Oak Field Services

"You knocked it out of the park with regard to my participants and I cannot wait for the opportunity to work with y’all again!"

-- Kate, KCW Global Research

“I have used RPV twice in recent years and both experiences were excellent. RPV makes the process straightforward and easy, their staff are helpful with any questions, and recruiting is very quick and efficient.” 

-- Jacqueline, BioMedical Insights, Inc.

"All the respondents were fabulous, and the interviews were highly productive. I couldn’t be more pleased with the recruit."

-- Jeff, FCBHealth

Rare Patient Voice

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(443) 986-1949


Visit our international site, rarepatientvoice.global


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Rare Patient Voice, LLC, Market Research, Towson, MD

Rare Patient Voice, LLC, Market Research, Towson, MD

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