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Rare Patient Voice - A Konovo Company

Helping Patients with Rare Diseases Voice Their Opinions

  • About Us
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Helping patients and caregivers share their voices

It Happened to Me Rare Disease Podcast Interview with Wes Michael

February 25, 2024 Laura Mullen

Leading up to Rare Disease Day 2024, RPV President and Founder Wes Michael was interviewed on It Happened to Me: A Rare Disease & Medical Challenges Podcast, and the episode … READ MORE

Filed Under: Business, Interviews, Patient

Weekly Warrior: Meet Peyton

February 23, 2024 Laura Mullen

  Peyton is our latest Weekly Warrior. She lives with Complex regional pain syndrome (CRPS), which causes severe pain when any affected area is touched. Despite that, she is busy … READ MORE

Filed Under: Patient

Weekly Warrior: Meet Mekenzie

February 16, 2024 Laura Mullen

Mekenzie, who lives with Crohn’s disease, is our latest Weekly Warror. She is also an RPV staffer and member of our Patient Advocacy team!   https://www.linkedin.com/feed/update/urn:li:activity:7164284418306625538

Filed Under: Patient

Weekly Warriors: Meet Kyla and Bella

February 9, 2024 Laura Mullen

Kyla and her daughter Bella are our newest Weekly Warriors. Little Bella was born with cartilage-hair hypoplasia, a rare disorder of bone growth. She has now had two major transplants … READ MORE

Filed Under: Patient

A Closer Look at RPV’s Role in Research

February 8, 2024 Laura Mullen

As a lead up to Rare Disease Day 2024, PicnicHealth recently interviewed Rare Patient Voice‘s Marketing and Communications Director, Laura Mullen, on RPV’s role in research, how we work with … READ MORE

Filed Under: Business, Patient

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Rare Patient Voice

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