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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

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.
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On “The Scope of Things,” Wes Michael spoke about how researchers need to hear what’s important to patients instead of making assumptions.
On
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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
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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 Starting RPV in Qual Recruit Podcast Interview

June 12, 2025

The Importance of Patient Perspectives in Healthcare Research and Product Development

May 28, 2025

Wes Michael Talks Empowering Patients Through Research

April 4, 2025

RPV’s Pam Cusick Talks Patient-Centered Research on Desperate for a Diagnosis

March 25, 2025

The Power of the Patient Voice in Rare Disease Research

March 12, 2025
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Media Mentions

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

New on the Bookshelf: Reinventing Patient Centricity

October 27, 2022

Rare Revolution Magazine Features Wes Michael in Rare Entrepreneur Spotlight

October 12, 2022
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Press Releases