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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

Case Studies and Papers

Case Studies

2025

Patient Insights in Co-Design of Clinical Trials
Patient Insights on Co-Design in Clinical Trials

Voices That Matter 2025
Voices That Matter: Transforming Healthcare
Through Patient Research

2024

ESOMAR 2024: Fraud Fighters

Fraud Fighters - How one company fought back and the lessons learned

The Voice of the Patient: Preference in Healthcare Research Participation
The Voice of the Patient: Preference in Healthcare Research Participation

Rare Disease Summit Image
Rare Caregiver Report: Experiences Supporting Loved Ones Living with Rare Diseases

Working Smarter Together Presentation first screen
Working Smarter Together: The Impact of
Accommodations in Business and the Neurodiverse
Community

Patient Communication Preferences in Clinical Trials
Patient Communication Preferences in Clinical Trials

2023

Patient Perspectives image for webinar
Patient Perspectives on Direct-to-Consumer Television Advertising

Boosting the Appeal of Clinical Trials—Making Participation of Greater Interest to Patients
Boosting the Appeal of Clinical Trials—Making Participation of Greater Interest to Patients

2022

The Long and Winding Road to Care
The Long and Winding Road to Care

2021

Health Literacy Initiative’s PSA
Health Literacy Initiative’s PSA

Patient Journeys and Insights for Oncology and Rare Diseases
Patient Journeys and Insights for Oncology and Rare Diseases

Patient Perspectives on Clinical Trial Participation
Patient Perspectives on Clinical Trial Participation

2020

Market Access: A Patient Perspective
Market Access: A Patient Perspective

 

 

Patient Insights on Telehealth: A Case Study
Patient Insights on Telehealth: A Case Study

Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients

Hearing is Believing: Reducing Barriers to Amplify the Patient Voice
Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

2017

The Role of Patient Advocacy Groups
The Role of Patient Advocacy Groups

2014

The Impact of Rare Diseases on Patients and Caregivers
The Impact of Rare Diseases on Patients and Caregivers

Papers

  • View a list of Deltaquest publications that relied in part or in whole on RPV recruitment assistance.

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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