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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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  • For Patients
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Helping patients and caregivers share their voices

In the News

Press Releases
Interviews
Media Mentions
 

Press Releases

Elevating Patient Voices for Rare Disease Day and Every Day

February 28, 2025

RPV Has Rewarded Patients and Caregivers $15 Million+ for Participation in Research

January 8, 2025

Rare Patient Voice Surpasses 10,000 Project Mark

September 16, 2024

RPV Celebrates the Rare Community, on Rare Disease Day and Everyday

February 29, 2024

RPV Starts New Year By Reaching a Milestone

January 4, 2024
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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.

Pam Cusick Interviewed on Unlocked with Skot Waldron

February 27, 2024

Wes Michael Interviewed on Live Life Rare Podcast

February 26, 2024

It Happened to Me Rare Disease Podcast Interview with Wes Michael

February 25, 2024

RPV’s Pam Cusick Interviewed on the “Desperate for a Diagnosis” Podcast

June 1, 2023

RPV President Wes Michael Interviewed on Entrepreneurship

February 14, 2023
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Media Mentions

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

“Beyond Limits” Explores Rare Disease Men’s Thoughts on Mental Health

October 10, 2022

For a Second Year, RPV Ranks on Inc 5000 List of Fastest-Growing Private Companies!

August 19, 2022
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Latest Blog Posts

  • Wes Michael Talks Connecting Patients and Researchers on The Pickle Jar Podcast
  • Sharing My Voice: Kathryn’s Story
  • 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

Check out our YouTube Channel

https://youtu.be/cfjkqh5Ykp0

Read Our Newsletter

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

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