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- About Us
- Meet Our Team
- Wes Michael, President and Founder
- Pam Cusick, Senior Vice President
- Ben Shedlock, Vice President of Field Operations
- David Minion, Panel Management and Information Security Manager
- Michael Taylor, Field Operations Team Lead
- Kirk Munsch, Patient Advocacy Manager
- Chantel Thompson, Qualitative Team Senior Project Manager
- Tiffany White, Director of Business Development
- Sarah Sanders, Field Operations Qualitative Team Lead
- Chris Cooper, Qualitative Team Senior Project Manager
- Jennifer Messier, Director of Patient Advocacy
- Christopher Cramer, Project Manager
- Laura Mullen, Director of Marketing and Communications
- Jennifer Harscheid, Qualitative Team Project Manager, Quality Assurance Specialist
- Becky Michael, Accounts Receivable Manager
- Richard DeLuca, Project Manager, Field Data Validation Specialist
- Patrick Kobrick, Business Development Associate
- Jessica Bolden, Business Development Associate
- Skyler Swagart, Panel Management and Data Integrity Coordinator
- Stacey Haines, Patient Outreach and Social Media Manager
- Molly Mackey, Project Manager
- Cheryll Davies, Project Manager
- Christina Cooper, Assistant Project Manager, Scheduler Team Lead
- Missy Smith, Panel Management and Data Integrity Lead
- Brooke Neal, Patient Outreach and Social Media Coordinator
- Rheia Beganovic, Project Manager
- Hana Salkanovic, Project Manager
- Ginger Segala, Business Development Lead
- Tana Karamustafić, Project Manager
- Laurie Cotumaccio, Marketing Associate
- Sarah Nelson, Panel Management Associate
- Mekenzie Oswalt, Panel Management Associate
- Amela Zeljo, Assistant Project Manager
- Mirza Rakovac, Helpdesk Specialist
- Sara Prosic, Business Development Associate
- Azra Dardagan, Panel Management Associate
- Ajna Lukovac, Business Development Associate
- Anaida Dozo, Assistant Project Manager
- Amina Malesic, Project Manager
- Asja Alispahic, Assistant Project Manager
- Delta Shoback, Assistant Project Manager
- Jolina Garcia, Scheduler
- Zinaida Hadzic, Scheduler
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- Market Access: A Patient Perspective
- Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
- Rare Patient Voice and inVibe amplify The Patient Voice!
- Patient Perspectives on Clinical Trial Participation
- Health Literacy Initiative’s PSA
- The Long and Winding Road to Care
- Boosting the Appeal of Clinical Trials—Making Participation of Greater Interest to Patients
- Patient Perspectives on Direct-to-Consumer Television Advertising
- Patient Insights on Co-Design in Clinical Trials
- Clinical Trial Recruitment with Rare Patient Voice
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- Newsletter #68 – January 15, 2025
- Newsletter #69 – February 19, 2025
- Newsletter #70 – March 26, 2025
- Newsletter #71 – April 16, 2025
- Newsletter #72 – May 28, 2025
- Newsletter #73 – June 26, 2025
- Newsletter #74 – July 23, 2025
- Newsletter #75 – August 20, 2025
- Newsletter #76 – September 30, 2025
- Newsletter #77 – October 22, 2025
- Newsletter #78 – November 19, 2025
- Newsletter #79 – December 17, 2025
- Newsletter #80 – January 21, 2026
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Posts by category
- Category: Business
- Join Us on 2.4 for a Discussion of AI Agents & Patient-Level Data – From Confirmation of Diagnosis to Insights
- A Look Back at RPV’s 2025
- Season’s Greetings from Rare Patient Voice!
- Connecting Clients with Patients & Caregivers for Studies Quickly is RPV’s Specialty
- Wes Michael Discusses the Patient Voice on Chronic Truth Podcast
- Happy Thanksgiving from RPV!
- The Critical Need to Address Mental Health in the Rare Disease Community, Upcoming Webinar Hosted by Xtalks
- The Co-Design Revolution: Patients and the Future of Clinical Trials
- Lessons Learned on MR Fraud – New Article by Wes Michael in Greenbook
- Pam Cusick Talks Caregiving on All Home Care Matters Podcast
- Strengthening the Connection Between Client Needs, Patients’ Voices, and Trusted Data
- Wes Michael Honored With 2025 Insight250 Award
- Read About Overcoming Challenges to Engaging Rare Patients in Clinical Research
- Wes Michael Talks Connecting Patients and Researchers on The Pickle Jar Podcast
- Pam Cusick Discusses the Power of Patient Stories on Story Conversations Podcast
- Meet Our Team: Patrick Kobrick, Business Development Associate
- Meet Our Team: Laurie Cotumaccio, Marketing Associate
- Meet Our Team: Amela Zeljo, Patient Advocacy Associate
- Wes Michael Discusses Rare Disease Patient Advocacy on MM+M Podcast
- Pam Cusick Discusses RPV’s Mission on Run Radio Podcast
- Wes Michael Talks Starting RPV in Qual Recruit Podcast Interview
- Meet Our Team: Tana Karamustafic, Project Manager
- The Importance of Patient Perspectives in Healthcare Research and Product Development
- What kinds of projects does RPV do?
- Who Are RPV’s Clients?
- How Quickly Can RPV Recruit Patients? Wes Michael Explains
- Meet Our Team: Sara Prosic, Business Development Associate
- Wes Michael Talks Empowering Patients Through Research
- Meet Our Team: Mirza Rakovac, Helpdesk Specialist
- RPV’s Pam Cusick Talks Patient-Centered Research on Desperate for a Diagnosis
- The Power of the Patient Voice in Rare Disease Research
- I Care for Rare Welcomes RPV’s Wes Michael to Discuss Rare Disease Day
- Elevating Patient Voices for Rare Disease Day and Every Day
- Discussing the Importance of Rare Disease Day on Unlocked with Skot Waldron
- RPV’s Pam Cusick Talks with Empowered Caregivers
- Meet Our Team: Rheia Beganovic, Project Manager
- Happy Valentine’s Day from RPV!
- Learn More About the RPV Premium Outreach Package
- The RPV Golden Rule: Precision in Patient Recruitment
- Wes Michael Talks Patient Empowerment on 1 in 20 Rare Disease Podcast
- Meet Our Team: Tiffany White, Director of Business Development
- A 2024 Rare Patient Voice Review
- RPV Has Rewarded Patients and Caregivers $15 Million+ for Participation in Research
- Season’s Greetings from RPV!
- Meet Our Team: Hana Salkanovic, Project Manager
- Pam Cusick Shares About the Patient Voice on Leading From Our Scars Podcast
- Happy Thanksgiving from RPV!
- Talking Marketing Strategy on the Strategycast with Lori Jones
- Wes Michael to Talk Fighting Market Research Fraud in Upcoming Webinar
- Meet Our Team: Laura Mullen, Director of Marketing and Communications
- Wes Michael Talks Patients on Let’s Talk Rare Podcast
- Happy Halloween from RPV!
- Wes Michael Interviewed on Huntington’s Disease Podcast
- Meet Our Team: Mirza Mujdzic-Jojic, Business Development Associate – EU
- RPV’s Rare Caregiver Survey Featured in Rare Revolution Magazine
- Wes Michael Discusses the Patient Voice on Raising Rare Podcast
- RPV’s Pam Cusick to Share Patient Views on Clinical Trial Awareness
- Meet Our Team: Skyler Swagart, Patient Advocacy Associate
- Rare Patient Voice Surpasses 10,000 Project Mark
- Intellus Honors RPV’s Wes Michael with Advocacy Award
- RPV and the Patient Voice on The Pickle Jar Podcast
- RPV’s Pam Cusick on The Special Needs Voice Podcast
- Happy Labor Day from RPV!
- Rare Revolution and Pam Cusick on Bringing Patients and Researchers Together
- Meet Our Team: Ginger Segala, Business Development Associate
- RPV’s Pam Cusick on A Spoon Full of Strength Chronic Illness Podcast
- Wes Michael on Patients and Caregivers Sharing Their Voices
- RPV Clients Share Their Thoughts
- RPV Is Worldwide!
- Meet Our Team: Madeline Nylen, Scheduler
- RPV’s Wes Michael on American Marketing Association Podcast
- RPV & Avant Health Release Results from New Study on the Diagnostic Journey
- Happy Fourth of July from RPV!
- RPV Is Accredited by the Better Business Bureau
- Meet Our Team: Jennifer Messier, Director of Patient Advocacy
- Empower Her Wellness Interview with Wes Michael on RPV and the Patient Voice
- Discussing the Patient Voice on HealthCare Untold Podcast
- Meet Our Team: David Minion, Senior Project and Information Security Manager
- Wes Michael on Rock and Roll Research
- Meet Our Team! Molly Mackey, Assistant Project Manager
- Come and Listen with Wes Michael
- RPV Receives Award from Global Health & Pharma
- Wes Michael on The Power of Patient Voices in Market Research
- Congratulations to Our Team Members!
- Meet Our Team: Jessica Bolden, Business Development Associate
- Advocating to Give Patients a Voice on Motivational Mondays
- Beyond Clinical Walls Podcast Discusses Patient Centric Trial Design with RPV
- Pam Cusick, Featured Member of Learning Disabilities of America Assoc.
- RPV Celebrates the Rare Community, on Rare Disease Day and Everyday
- Pam Cusick Interviewed on Unlocked with Skot Waldron
- Wes Michael Interviewed on Live Life Rare Podcast
- It Happened to Me Rare Disease Podcast Interview with Wes Michael
- Meet Our Team: Brooke Neal, Patient Advocacy Associate
- A Closer Look at RPV’s Role in Research
- The Gold Standard: Quality Takes Time
- Meet Our Team: Ben Shedlock, Director of Field Operations
- RPV Starts New Year By Reaching a Milestone
- A Very Happy New Year from RPV!
- A Look Back at 2023
- Season’s Greetings from Rare Patient Voice
- Meet Our Team: Stacey Haines, Patient and Social Media Outreach Associate
- Planning for Ongoing Excellence and Gold Standard Service at RPV
- Happy Thanksgiving from Rare Patient Voice!
- The Voices of Family Caregivers Need to Be Heard
- Meet Our Team: Cheryll Davies, Assistant Project Manager
- Revolutionizing Patient Recruitment and Market Research
- Who Is Being Excluded From DEI? An Article by RPV’s Pam Cusick
- Meet Our Team: Christopher Cramer, Assistant Project Manager
- 10 Facts for 10 Years of RPV: Video #10 – Our Clients
- 10 Facts for 10 Years of RPV: Video #9 – We recruit for all types of research
- 10 Facts for 10 Years of RPV: Video #8 – The RPV team is terrific!
- 10 Facts for 10 Years of RPV: Video #7 – Security is key at RPV!
- 10 Facts for 10 Years of RPV: #6 – Patients Love Sharing Their Voices!
- Wes Michael Discusses Improving HealthCare Through Patient Engagement on Inspired Insider Podcast
- 10 Facts for 10 Years of RPV: #5 – We pay patients and family caregivers quickly!
- Meet Our Team: Chantel Thompson, Senior Project Manager
- 10 Facts for 10 Years of RPV: #4 – Our Panel of Patients is Real!
- 10 Facts for 10 Years of RPV: #3 – RPV is Worldwide!
- Pam Cusick Honored by Intellus Worldwide for Professional Development
- It’s a Three-peat! RPV Ranks Again on the Inc. 5000 List
- 10 Facts for 10 Years of RPV: #2 – We Are Non-Rare and Rare!
- 10 Facts for 10 Years of RPV: #1 – Many of Our Staffers Come from the Patient Community
- Meet Our Team: Missy Smith, Patient Advocacy Associate
- The Rare Patient Voice Story Began 10 Years Ago This Month
- Meet Our Team: Michael Taylor, Senior Project Manager and Quality Assurance Manager
- RPV Announces New Electronic Payment Option for Patients
- Today’s Caregiver Magazine Honors RPV with a 2023 Caregiver Friendly® Award
- RPV’s Pam Cusick Interviewed on the “Desperate for a Diagnosis” Podcast
- Meet Our Team: Christina Cooper, Project Scheduler
- Meet Our Team: Sarah Sanders, Senior Project Manager
- Once Upon a Gene Episode with RPV’S Wes Michael on Sharing Your Voice
- Wes Michael Honored with 2023 Pinnacle Award from MM+M
- Meet Our Team: Chris Cooper, Senior Project Manager
- Meet Our Team: Felecia Bryant, Project Manager
- RPV President Wes Michael Interviewed on Entrepreneurship
- RPV’s Jessica Bolden Shares Her Voice for February
- 10 RPV Facts for 10 Years
- Meet Our Team: Jennifer Harscheid, Project Manager
- A Testimonial from Glenna Crooks, Strategic Health Policy International
- 10 Questions with RPV’s President and Founder, Wes Michael
- First Ever RPV Company Retreat Takes Place in Florida
- Founder and President Wes Michael on RPV’s First 10 Years
- RPV Celebrates 10th Anniversary in 2023!
- Pam Cusick Graduates from THRIVE
- Meet Our Team: Kirk Munsch, Patient Advocacy Manager
- RPV Attends 2022 BIONJ Patient Advocacy Summit
- Meet Our Team: Rick DeLuca, Project Manager
- RPV Releases Pharma’s Most Wanted Patients List, October 2022 vs September 2022 Edition
- Wes Michael Interviewed by Alex D. Tremble on “The Executive Appeal”
- New on the Bookshelf: Reinventing Patient Centricity
- Rare Revolution Magazine Features Wes Michael in Rare Entrepreneur Spotlight
- “Beyond Limits” Explores Rare Disease Men’s Thoughts on Mental Health
- RPV Reveals List of Diseases and Conditions Most Requested for Patient Recruitment
- Wes Michael Talks Marketing with Sima Vasa on Data Gurus Podcast
- For a Second Year, RPV Ranks on Inc 5000 List of Fastest-Growing Private Companies!
- Need to raise funds for your org’s efforts? Join our referral program and let RPV help amplify your voice!
- The Rare Disorder Podcast interviews RPV’s Wes Michael
- RPV’s Pam Cusick, a 2022 Woman of Distinction
- AMA Baltimore Honors RPV with Market Research Award
- Wes Joins RPV Community Member on “Real Thoughts and Conversations” Podcast
- London Gets a Visit from RPV
- RPV & Clinakos Talk “The Power of Patient Data” on LinkedIn Live
- RPV’s Wes Michael Is a Hall of Famer!
- Wes Michael in PharmaVOICE on How Successful Clinical Trial Recruitment Depends on Listening to Patients
- RPV’s Pam Cusick Named a Woman of Distinction by MM+M
- Straight Talk on Clinical Trials: Your Questions Answered
- Rare Patient Voice Chosen for Inclusion in the Valuable Directory
- RPV’s Female Leaders Celebrate International Women’s Day 2022
- A Rare Disease Day Message from RPV
- According to New Report, Today’s Diagnostic Journey for Patients Shows Progress – But Unevenly
- DE&I Discussions and the Disability Community: Making the Connection
- Patients in Australia and New Zealand Can Now Make Their Voices Heard!
- What diseases do we cover?
- Wes Michael Talks Recruiting Nightmares with QRCA
- RPV to participate in “Straight Talk on Clinical Trials,” free webinar hosted by CISCRP, 2.16.2022
- Second Round of January 2022 Staff Changes at RPV
- Rare Patient Voice Kicks off 2022 with Major Milestones and Staff Announcements
- A Look Back at 2021 from RPV’s Wes Michael
- It’s the Most Difficult Time of the Year: Fourth Quarter Blues
- Wes Michael on RPV in Europe
- RPV’s Pam Cusick on Supporting Ourselves and Others
- The Basics of Rare Patient Voice for Clients
- Bloodstream Podcast Interview Wes Michael on Origins of RPV
- Rare Patient Voice Launches New “Sharing My Voice” Video Series
- The Power of the Patient Voice: Talking DTC Webinar Recording Available Now
- PharmaVOICE Hosts Webinar with RPV and Clinakos: Combining Patient Data with the Patient Voice
- Rare Patient Voice Finalist for 2021 Panel Company of the Year Award from Quirk’s
- Germany’s +3 Magazine Interviews Pam Cusick on the Patient Voice
- RPV’s Wes Michael Named a 2021 Innovator of the Year by Xpectives.Health
- CheckRare Interviews Wes Michael on RPV’s Recent Milestone
- Rare Patient Voice Ranks on the 2021 Inc. 5000, With Three-Year Revenue Growth of 111 Percent!
- Wes Michael Talks Panel Integrity and Keeping it Clean on “Research Business Daily Report” with Bob Lederer
- The Power of Patient Data and Experience: The Rare Patient Voice and Clinakos Partnership
- Patients Rate their Clinical Trial Experience Positively, but Trial Locations Still Pose Barriers to Enrollment
- Rare Patient Voice Celebrates a Lucky 7 Milestone!
- How much detail to reveal in survey invitations?
- Is Telehealth Here to Stay?
- 2020 Year in Review
- Inspiration and Motivation
- The Importance of Patient Advocacy Groups
- Rare Patient Voice Expands to Europe
- The North Wind and the Sun
- Should companies do marketing to their market research panels?
- Some companies have customer service backwards
- What we can learn about business from the Blitz in 1940
- Lessons from the Tortoise and the Hare
- We’re still recruiting patients even during Covid
- Let’s Name our Zebra Mascot – but not Zebra McZebface!
- Eventually . . . Why Not Now?
- People don’t always do what you want them to!
- The Rare Patient Voice Check Stimulus Program
- We can do a better job on screeners!
- COVID-19 Impact on patients with chronic conditions and those who are immunocompromised
- What is a Feasibility Study?
- Please take part in our Referral Program!
- What are we doing about COVID 19?
- Got Patients?
- Thanks to our vendors
- Thank You to our Clients
- Not Just Rare Patients
- Surveys need to be mobile-friendly!
- What is Rare Patient Voice? What do we do?
- Best Efforts – What does that mean?
- Fairness in Rewarding Patients
- LinkedIn Tip & Trick #2 – Hijacking Posts
- Linked In Tips and Tricks – growing your network
- Halloween – a Market Research Holiday
- Going Postal to Run Your Small Business
- Tips for Writing Screeners
- Best Practices for Recruiting for IRB Studies
- We’ve paid patients over $4.1 million for taking part in our surveys!
- Let’s See More Kickoff Calls
- RPV – Really Positive Value
- Get to know Intellus Worldwide
- We Support Patient Registries
- Winston Churchill and Rare Diseases
- Remember the VW Beetle Snowplow Ad from the ’60’s?
- It’s 8 PM and you need a bid – PAM to the rescue
- Can we obtain Physician Confirmation of Diagnosis?
- How LinkedIn works for Rare Patient Voice
- Get to Know: ALS
- PAM is Here!
- Get to Know Hemophilia
- We now have more health conditions!
- Does Rare Patient Voice Just Recruit Rare Patients?
- Get to Know Macular Degeneration
- Get to Know: Sickle Cell Disease (SCD)
- Why do companies take so long to pay?
- How do we determine project feasibility?
- Where do we find our clients?
- What feedback do you get from clients?
- Are Rare Patient Voice panelists spread across the United States?
- My Least Favorite Topic – No-Shows
- Does Rare Patient Voice have patients with other diseases or conditions?
- What Patient Information Does Rare Patient Voice Collect?
- What is a Handover?
- Do We Recruit Caregivers?
- Are our patient panels representative?
- How do we prevent fraudulent respondents?
- Secrets when you want more respondents
- Time is Money!
- The secret to your success
- Caregivers – Myth and Reality
- Category: Community
- Germany’s +3 Magazine Interviews Pam Cusick on the Patient Voice
- How much detail to reveal in survey invitations?
- Is Telehealth Here to Stay?
- 2020 Year in Review
- Inspiration and Motivation
- Thanks to We’re Not Drunk, We Have MS, our Terrific MS Partner
- Thanks to WhatNext, Our Terrific Cancer Patient Partner
- The North Wind and the Sun
- Lessons from the Tortoise and the Hare
- Don’t be surprised to get a text from Rare Patient Voice
- How does Rare Patient Voice Work? Can I get paid for doing surveys?
- Let’s Name our Zebra Mascot – but not Zebra McZebface!
- We can’t see you at events, but we still want you!
- Disabled Individuals Can Get a Ticket to Work
- What is the SSA’s PASS (Plan for Achieving Self Support) Program?
- The Rare Patient Voice Check Stimulus Program
- Please take part in our Referral Program!
- Thank you to our patients and caregivers
- We love referrals. But read the invite carefully!
- Not all surveys can be done on mobile devices. Please read the invites carefully!
- Please don’t speed through our surveys!
- Save Your Emails – it will help us make sure you get paid!
- We’ve paid patients over $4.1 million for taking part in our surveys!
- We Support Patient Registries
- Winston Churchill and Rare Diseases
- Tell me more about the check I will get from Rare Patient Voice
- A Peek Behind the Scenes at Rare Patient Voice
- Why didn’t I qualify for a survey? And will my data be used even if I didn’t qualify?
- What health conditions do you accept?
- Get to Know Hemophilia
- Get to Know Macular Degeneration
- Get to Know: Sickle Cell Disease (SCD)
- Why didn’t I qualify for a survey? And will my data be used even if I didn’t?
- Category: Get To Know
- Category: Hemophilia
- Category: Interviews
- Pam Cusick Talks Caregiving on All Home Care Matters Podcast
- Wes Michael Talks Connecting Patients and Researchers on The Pickle Jar Podcast
- Pam Cusick Discusses the Power of Patient Stories on Story Conversations Podcast
- Wes Michael Discusses Rare Disease Patient Advocacy on MM+M Podcast
- Pam Cusick Discusses RPV’s Mission on Run Radio Podcast
- Wes Michael Talks Starting RPV in Qual Recruit Podcast Interview
- The Importance of Patient Perspectives in Healthcare Research and Product Development
- Wes Michael Talks Empowering Patients Through Research
- RPV’s Pam Cusick Talks Patient-Centered Research on Desperate for a Diagnosis
- The Power of the Patient Voice in Rare Disease Research
- I Care for Rare Welcomes RPV’s Wes Michael to Discuss Rare Disease Day
- Discussing the Importance of Rare Disease Day on Unlocked with Skot Waldron
- RPV’s Pam Cusick Talks with Empowered Caregivers
- RPV’s Pam Cusick Talks Patients and Research on The Bridge Podcast
- Wes Michael Talks Patient Empowerment on 1 in 20 Rare Disease Podcast
- Pam Cusick Shares About the Patient Voice on Leading From Our Scars Podcast
- Talking Marketing Strategy on the Strategycast with Lori Jones
- Wes Michael Talks Patients on Let’s Talk Rare Podcast
- Wes Michael Interviewed on Huntington’s Disease Podcast
- Wes Michael Discusses the Patient Voice on Raising Rare Podcast
- RPV and the Patient Voice on The Pickle Jar Podcast
- RPV’s Pam Cusick on The Special Needs Voice Podcast
- Rare Revolution and Pam Cusick on Bringing Patients and Researchers Together
- RPV’s Wes Michael on American Marketing Association Podcast
- Empower Her Wellness Interview with Wes Michael on RPV and the Patient Voice
- Discussing the Patient Voice on HealthCare Untold Podcast
- Wes Michael on Rock and Roll Research
- Pam Cusick Interviewed on Unlocked with Skot Waldron
- Wes Michael Interviewed on Live Life Rare Podcast
- It Happened to Me Rare Disease Podcast Interview with Wes Michael
- RPV’s Pam Cusick Interviewed on the “Desperate for a Diagnosis” Podcast
- RPV President Wes Michael Interviewed on Entrepreneurship
- Wes Michael Interviewed by Alex D. Tremble on “The Executive Appeal”
- Wes Michael Talks Marketing with Sima Vasa on Data Gurus Podcast
- The Rare Disorder Podcast interviews RPV’s Wes Michael
- Wes Joins RPV Community Member on “Real Thoughts and Conversations” Podcast
- Bloodstream Podcast Interview Wes Michael on Origins of RPV
- Category: Media Mentions
- Lessons Learned on MR Fraud – New Article by Wes Michael in Greenbook
- Read About Overcoming Challenges to Engaging Rare Patients in Clinical Research
- RPV’s Rare Caregiver Survey Featured in Rare Revolution Magazine
- New on the Bookshelf: Reinventing Patient Centricity
- Rare Revolution Magazine Features Wes Michael in Rare Entrepreneur Spotlight
- “Beyond Limits” Explores Rare Disease Men’s Thoughts on Mental Health
- For a Second Year, RPV Ranks on Inc 5000 List of Fastest-Growing Private Companies!
- AMA Baltimore Honors RPV with Market Research Award
- Wes Michael in PharmaVOICE on How Successful Clinical Trial Recruitment Depends on Listening to Patients
- DE&I Discussions and the Disability Community: Making the Connection
- RPV to participate in “Straight Talk on Clinical Trials,” free webinar hosted by CISCRP, 2.16.2022
- Category: Meet The Patients
- Category: Patient
- A Look Back at RPV’s 2025
- Season’s Greetings from Rare Patient Voice!
- Happy Thanksgiving from RPV!
- RPV on the Road: Meeting Our Community at Patient Events and Conferences
- Sharing My Voice: Kathryn’s Story
- Weekly Warrior: Meet Autumn
- Weekly Warrior: Meet Cameron
- The Power of the Patient Voice in Rare Disease Research
- I Care for Rare Welcomes RPV’s Wes Michael to Discuss Rare Disease Day
- Elevating Patient Voices for Rare Disease Day and Every Day
- RPV’s Pam Cusick Talks with Empowered Caregivers
- Happy Valentine’s Day from RPV!
- Weekly Warrior: Meet Lisa
- Weekly Warrior
- RPV’s Pam Cusick Talks Patients and Research on The Bridge Podcast
- Weekly Warrior: Meet Betty
- Wes Michael Talks Patient Empowerment on 1 in 20 Rare Disease Podcast
- Weekly Warrior: Meet Bri
- Season’s Greetings from RPV!
- Weekly Warrior: Meet Allison
- Happy Thanksgiving from RPV!
- Happy Halloween from RPV!
- Weekly Warrior: Meet Julie
- Weekly Warrior: Meet Amy
- Happy Labor Day from RPV!
- Weekly Warrior: Meet Keyla
- Weekly Warrior: Meet Tyesha
- Weekly Warrior: Meet Sydney
- Weekly Warrior: Meet Tiffany
- Weekly Warrior: Meet Kait
- Weekly Warrior: Meet Vanessa
- Weekly Warrior: Meet Sarah
- Happy Fourth of July from RPV!
- Rare Patient Voice Basics
- Weekly Warrior: Meet Brandee
- Weekly Warrior: Meet Jackie
- Weekly Warrior: Meet Michele
- Weekly Warrior: Meet Lily
- Weekly Warrior: Meet Brittany
- Weekly Warrior: Meet Rachel
- Weekly Warrior: Meet Rich
- Come and Listen with Wes Michael
- Weekly Warrior: Meet Haley
- Weekly Warrior: Meet Mackenzie
- Pam Cusick, Featured Member of Learning Disabilities of America Assoc.
- Weekly Warrior: Meet Jamie
- RPV Celebrates the Rare Community, on Rare Disease Day and Everyday
- Pam Cusick Interviewed on Unlocked with Skot Waldron
- Wes Michael Interviewed on Live Life Rare Podcast
- It Happened to Me Rare Disease Podcast Interview with Wes Michael
- Weekly Warrior: Meet Peyton
- Weekly Warrior: Meet Mekenzie
- Weekly Warriors: Meet Kyla and Bella
- A Closer Look at RPV’s Role in Research
- The Gold Standard: Quality Takes Time
- Weekly Warrior: Meet Kiera
- Michael & Mom’s RPV Rap
- Weekly Warrior: Meet Anita
- Weekly Warriors: Meet Karen and Dominic
- A Very Happy New Year from RPV!
- A Look Back at 2023
- Season’s Greetings from Rare Patient Voice
- Weekly Warrior: Meet Aaron
- Weekly Warrior: Meet Nicole
- Weekly Warrior: Meet Amy
- Happy Thanksgiving from Rare Patient Voice!
- The Voices of Family Caregivers Need to Be Heard
- Weekly Warrior: Meet Emily
- Weekly Warrior: Meet Jen
- Weekly Warrior: Meet Jayden
- Happy Halloween from RPV!
- Weekly Warrior: Meet Oliver
- Weekly Warrior: Meet Kira
- Weekly Warrior: Meet Iris
- Weekly Warriors: Meet Carlie and Arlo
- Weekly Warrior: Meet Connie
- Weekly Warrior: Meet Holly
- Weekly Warrior: Meet Charlotte
- Weekly Warrior: Meet Hope
- Weekly Warrior: Meet Hattie
- Weekly Warrior: Meet Ashley
- 10 Facts for 10 Years of RPV: #1 – Many of Our Staffers Come from the Patient Community
- Weekly Warrior: Meet Rachel
- Weekly Warrior: Meet Danielle
- Happy July 4th from Rarity and All of Us at RPV!
- Weekly Warrior: Meet Dylan
- Weekly Warrior: Meet Michael
- RPV Announces New Electronic Payment Option for Patients
- Weekly Warrior: Meet Michelle
- Weekly Warriors: Meet Katie and Jolene
- Weekly Warrior: Meet Keyla
- Weekly Warrior: Meet Brenda
- Weekly Warrior: Meet Allison
- Weekly Warrior: Meet Grace
- Weekly Warrior: Meet Phoebe
- Weekly Warrior: Meet Ira
- Weekly Warrior: Meet Zach
- Weekly Warrior: Meet Iris Ann
- Weekly Warrior: Meet Harper
- Weekly Warrior: Meet Eric
- Weekly Warriors: Meet Morgan and Maddison
- Weekly Warriors: Meet Sebastian and Christopher
- A Special Song for Rare Disease Day 2023
- Weekly Warrior: Meet Grace
- Weekly Warrior
- Weekly Warrior: Meet Jen
- RPV’s Jessica Bolden Shares Her Voice for February
- Weekly Warrior: Meet Angela
- Weekly Warrior: Meet Emily
- Weekly Warrior: Meet Dani
- Weekly Warrior: Meet Kaitlyn
- Weekly Warrior: Meet Cydney
- RPV Celebrates 10th Anniversary in 2023!
- Weekly Warrior: Meet AJ
- Weekly Warrior: Meet Jamie
- Weekly Warrior: Meet Erika
- Weekly Warrior: Meet Amelia
- Weekly Warrior: Meet Dylan
- Weekly Warrior: Meet Brindley
- Weekly Warriors: Meet Dan and Dee
- Weekly Warrior: Meet Joey
- Weekly Warrior: Meet Sadie
- Weekly Warrior: Meet Lenette
- Weekly Warrior: Meet Kass
- Rare Revolution Magazine Features Wes Michael in Rare Entrepreneur Spotlight
- “Beyond Limits” Explores Rare Disease Men’s Thoughts on Mental Health
- Weekly Warrior: Meet K
- Weekly Warrior: Meet Tara
- Weekly Warrior: Meet Jade
- Weekly Warrior: Meet Jen
- Weekly Warrior: Meet Darren
- Weekly Warrior: Meet Marith
- Weekly Warrior: Meet Tom
- Weekly Warrior: Meet Kelsey
- Need to raise funds for your org’s efforts? Join our referral program and let RPV help amplify your voice!
- Weekly Warrior: Meet Allie
- Weekly Warrior: Meet Denise
- A Thank You to Our Patients, Caregivers, and Patient Advocacy Group Partners
- Weekly Warrior: Meet Sam
- Weekly Warrior: Meet Ria
- Weekly Warrior: Meet Jade
- Real & Rare with Sarah: The Stages of Life with a Rare Disease
- Weekly Warrior: Meet Rachel Cutie Pie – Rare Patient Voice
- The Rare Disorder Podcast interviews RPV’s Wes Michael
- Weekly Warrior: Meet Sam
- Real & Rare with Sarah: Make Time for You
- Weekly Warrior: Meet Camila
- Weekly Warrior: Meet Kayla
- Real & Rare with Sarah: May is Mental Health Awareness Month
- Weekly Warrior: Meet Lydia
- Weekly Warrior: Meet Mike
- Wes Joins RPV Community Member on “Real Thoughts and Conversations” Podcast
- Weekly Warrior: Meet Meghan
- Weekly Warrior: Meet Coop
- Weekly Warrior: Meet Tayler
- Weekly Warrior: Meet Sharon
- Weekly Warrior: Meet Elouise
- Weekly Warrior: Meet Dani
- Straight Talk on Clinical Trials: Your Questions Answered
- Weekly Warrior: Meet Rachel
- Weekly Warrior: Meet Frank
- A Rare Disease Day Message from RPV
- Weekly Warrior: Meet Brittany
- Road to Rare Disease Day: Vaila and EJ’s Story
- Road to Rare Disease Day: Tara’s Story
- Weekly Warriors: Meet Stacey and Iris Ann
- According to New Report, Today’s Diagnostic Journey for Patients Shows Progress – But Unevenly
- Road to Rare Disease Day: Chelsea’s Story
- Road to Rare Disease Day: Bexton’s Story
- Weekly Warrior: Meet Jenny
- DE&I Discussions and the Disability Community: Making the Connection
- Patients in Australia and New Zealand Can Now Make Their Voices Heard!
- Weekly Warrior: Meet Kerry
- Weekly Warrior: Meet Carin
- RPV to participate in “Straight Talk on Clinical Trials,” free webinar hosted by CISCRP, 2.16.2022
- Weekly Warrior: Meet Emily
- Second Round of January 2022 Staff Changes at RPV
- Weekly Warrior: Meet Jamie
- Weekly Warrior: Meet Zoann
- Rare Patient Voice Kicks off 2022 with Major Milestones and Staff Announcements
- Weekly Warrior: Meet Amanda
- Weekly Warrior: Meet Kim
- Weekly Warriors: Meet Abby
- Weekly Warriors: Meet Madison
- Bloodstream Podcast Interview Wes Michael on Origins of RPV
- Rare Patient Voice Launches New “Sharing My Voice” Video Series
- Germany’s +3 Magazine Interviews Pam Cusick on the Patient Voice
- CheckRare Interviews Wes Michael on RPV’s Recent Milestone
- Rare Patient Voice Ranks on the 2021 Inc. 5000, With Three-Year Revenue Growth of 111 Percent!
- Patients Rate their Clinical Trial Experience Positively, but Trial Locations Still Pose Barriers to Enrollment
- Rare Patient Voice Celebrates a Lucky 7 Milestone!
- RPV Basics
- How much detail to reveal in survey invitations?
- Impact of the Covid-19 Pandemic on Rare Disease Patients and Caregivers
- Join Rare Disease Day 2021
- Is Telehealth Here to Stay?
- The Role of Patient Panels in Healthcare Market Research
- The Benefits and Disadvantages of Telehealth
- Rare Patient Voice Expands to Europe
- Thanks to We’re Not Drunk, We Have MS, our Terrific MS Partner
- Thanks to WhatNext, Our Terrific Cancer Patient Partner
- The North Wind and the Sun
- Lessons from the Tortoise and the Hare
- Don’t be surprised to get a text from Rare Patient Voice
- How does Rare Patient Voice Work? Can I get paid for doing surveys?
- Let’s Name our Zebra Mascot – but not Zebra McZebface!
- We can’t see you at events, but we still want you!
- Disabled Individuals Can Get a Ticket to Work
- What is the SSA’s PASS (Plan for Achieving Self Support) Program?
- COVID-19 Impact on patients with chronic conditions and those who are immunocompromised
- Please take part in our Referral Program!
- What are we doing about COVID 19?
- Thank you to our patients and caregivers
- We love referrals. But read the invite carefully!
- Not all surveys can be done on mobile devices. Please read the invites carefully!
- Please don’t speed through our surveys!
- Save Your Emails – it will help us make sure you get paid!
- We’ve paid patients over $4.1 million for taking part in our surveys!
- We Support Patient Registries
- Winston Churchill and Rare Diseases
- Tell me more about the check I will get from Rare Patient Voice
- A Peek Behind the Scenes at Rare Patient Voice
- Get to Know: ALS
- Why didn’t I qualify for a survey? And will my data be used even if I didn’t qualify?
- What health conditions do you accept?
- Get to Know Hemophilia
- Get to Know Macular Degeneration
- Get to Know: Sickle Cell Disease (SCD)
- Why didn’t I qualify for a survey? And will my data be used even if I didn’t?
- Preparing your home for elderly seniors
- Category: Press Releases
- The Critical Need to Address Mental Health in the Rare Disease Community, Upcoming Webinar Hosted by Xtalks
- Elevating Patient Voices for Rare Disease Day and Every Day
- RPV Has Rewarded Patients and Caregivers $15 Million+ for Participation in Research
- Rare Patient Voice Surpasses 10,000 Project Mark
- RPV Celebrates the Rare Community, on Rare Disease Day and Everyday
- RPV Starts New Year By Reaching a Milestone
- RPV Celebrates 10th Anniversary in 2023!
- RPV Releases Pharma’s Most Wanted Patients List, October 2022 vs September 2022 Edition
- RPV Reveals List of Diseases and Conditions Most Requested for Patient Recruitment
- Rare Patient Voice Chosen for Inclusion in the Valuable Directory
- According to New Report, Today’s Diagnostic Journey for Patients Shows Progress – But Unevenly
- Patients in Australia and New Zealand Can Now Make Their Voices Heard!
- Second Round of January 2022 Staff Changes at RPV
- Rare Patient Voice Kicks off 2022 with Major Milestones and Staff Announcements
- Rare Patient Voice Finalist for 2021 Panel Company of the Year Award from Quirk’s
- RPV’s Wes Michael Named a 2021 Innovator of the Year by Xpectives.Health
- Rare Patient Voice Ranks on the 2021 Inc. 5000, With Three-Year Revenue Growth of 111 Percent!
- Patients Rate their Clinical Trial Experience Positively, but Trial Locations Still Pose Barriers to Enrollment
- Rare Patient Voice Expands to Europe
- Category: Real & Rare with Sarah
- Category: Uncategorized
- Category: You Ask We Answer
- WHY VIDEO? Why Such An Emphasis On Video
- TV ADVERTISING: Should TV Ads Reveal Drug Prices?
- RESPONDENT FRAUD: What Does RPV Do To Prevent It?
- RECRUITING: How Do We Recruit Cancer Patients?
- PETE ROSE: Why Is Wes Such a Big Fan?
- Partnering : How Can I Partner With RPV?
- PARKINSON’S DISEASE: Is There A Treatment For Parkinsons Disease?
- NO-SHOWS!: What Does RPV Do About No-Shows?
- Getting Paid Will I Really Make $100/Hour
- FEEDBACK: What Feedback Does RPV Get From Clients?
- DRUG CATEGORIES: What Are the Hot New Ones?
- Who Are Our Clients?
- CHECKING ACCOUNTS: What If A Panelist Doesn’t Have A Checking Account?
- CAN’T FIND: Can’t Find What You’re Looking For On Our Website?
