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Rare Patient Voice - A Konovo Company

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

In the News

Interviews
Media Mentions
Press Releases
 

Interviews

Here are some highlights of members of the Rare Patient Voice leadership team in recent interviews.

On “The Scope of Things,” Wes Michael spoke about how researchers need to hear what’s important to patients instead of making assumptions.
Play Video
On “The Scope of Things,” Wes Michael spoke about how researchers need to hear what’s important to patients instead of making assumptions.
On
Play Video
On "Spoon Full of Strength," Pam Cusick shared how many people want to participate in research to help patients in the future, even if the results will not benefit them directly.
On the
Play Video
On the "Run Radio Podcast," Pam Cusick spoke about how patients are truly the experts on their own conditions.
On
Play Video
On "The Bridge" podcast, Pam Cusick discussed the intersection of rare diseases and disabilities.

Wes Michael Talks Helping Give Patients a Voice on The Teaching Journeys

September 17, 2026

Wes Michael Interviewed in Leadership Today Blog

May 28, 2026

Wes Michael Discusses Patients and Clinical Research on Beyond the Buzz

April 28, 2026

Wes Michael Discusses Mental Health and Rare Disease on the Caregiver Relief Podcast

March 13, 2026

HealthCare UnTold Podcast Welcomes RPV’s Pam Cusick

March 6, 2026
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Media Mentions

RPV Survey Referenced in PharmaVoice Article on Rare Disease R&D

September 18, 2026

Wes Michael Interviewed in Leadership Today Blog

May 28, 2026

Lessons Learned on MR Fraud – New Article by Wes Michael in Greenbook

November 10, 2025

Read About Overcoming Challenges to Engaging Rare Patients in Clinical Research

October 6, 2025

RPV’s Rare Caregiver Survey Featured in Rare Revolution Magazine

October 14, 2024
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Press Releases

RPV Releases Pharma’s Most Wanted Patients List, October 2022 vs September 2022 Edition

November 15, 2022

RPV Reveals List of Diseases and Conditions Most Requested for Patient Recruitment

October 4, 2022

Rare Patient Voice Chosen for Inclusion in the Valuable Directory

March 8, 2022

According to New Report, Today’s Diagnostic Journey for Patients Shows Progress – But Unevenly

February 17, 2022

Patients in Australia and New Zealand Can Now Make Their Voices Heard!

February 9, 2022
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Latest Blog Posts

  • RPV Survey Referenced in PharmaVoice Article on Rare Disease R&D
  • Wes Michael Talks Helping Give Patients a Voice on The Teaching Journeys
  • An Introduction to RPV from Founder and President Wes Michael
  • Wes Michael Interviewed in Leadership Today Blog
  • RPV & Sciensus spotlight rare disease access burden in Europe with ISPOR 2026 poster

Read Our Newsletter

Read our Newsletter
What’s New at Rare Patient Voice?

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