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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

I Have a Voice That Deserves to Be Heard!

Why Sign Up with Rare Patient Voice?

  • Provide your input as a patient or family caregiver to improve products and services.
  • Help companies and researchers focus more on your disease.
  • Earn rewards for participating in interviews and surveys.

Join the RPV community! SIGN UP NOW!

Already a member? UPDATE YOUR PROFILE!

I Have a Voice That Deserves to Be Heard!

Why Sign Up with Rare Patient Voice?

  • Provide your input as a patient or family caregiver to improve products and services.
  • Help companies and researchers focus more on your disease.
  • Earn rewards for participating in interviews and surveys.

Join the RPV community!
SIGN UP NOW!


Already a member?
UPDATE YOUR PROFILE!

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 40 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.

Cortney's Story
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Leonard's Story
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Kathryn's Story
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Joanna's Story
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Karrie's Story
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Natalie's Story
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Zack's Story
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Terri's Story
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Tom's Story
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Kathleen's Story
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Click the arrow to advance to more videos!

Patient Blog Posts

Client Blog Posts

Weekly Warrior - Meet Sydney

Weekly Warrior: Meet Sydney

August 7, 2024

Sydney is our latest Weekly Warrior, and she lives with multiple chronic illnesses. First diagnosed in 2020 with hypothyroidism, things snowballed from there. But she has a positive attitude, choosing to … READ MORE

Weekly Warrior - Tiffany Taylor

Weekly Warrior: Meet Tiffany

August 2, 2024

Tiffany is a blindness accessibility and audio description consultant. She has danced professionally with the company Jess Curtis Gravity in San Francisco and Berlin and serves on their Board of … READ MORE

Who Are RPV’s Clients?

May 8, 2025

Who are Rare Patient Voice clients? In this video clip, RPV President Wes Michael discusses the varied companies and organizations comprising our client list.

How Quickly Can RPV Recruit Patients? Wes Michael Explains

April 30, 2025

The recruitment phase of research studies can be a key part of a study’s potential success. While patient recruitment had taken a significant amount of time in the past, progress … READ MORE

Read More Blog Posts
Read More Blog Posts

RECENT FEEDBACK FROM PATIENTS, CAREGIVERS, AND CLIENTS

“I have been connected to Rare Patient Voice for a while and appreciate being included in studies that I qualify for. It lets me know that I am seen, heard, and respected.”

-- Daniel, patient

“Every study I do for Rare Patient Voice has been smooth with quick payment.”

-- Patrick, patient

“RPV studies are always informative and interesting. I'm glad to be a member and help with my experience.”

-- Philip, patient

“I love Rare Patient Voice. Easy to do surveys and the pay for your opinion is very generous. Thank you for giving me a say.”

-- Sherry, patient

"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

"Whenever I have patient projects and especially when more than one panel is needed, I always include RPV. Whether RPV can deliver the entire project or not, you're able to use the data from their participants as a quality benchmark for other providers. If the data from another partner is different, it's a cue to take a look to see how RPV's quality with patient research is top notch!"

-- Conal Murray, Insights Director, Qlarity Access

"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

Regular business hours are Monday through Friday, 9am-5pm ET.

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