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All Home Care Matters

Pam Cusick Senior Vice President at Rare Patient Voice

All Home Care Matters

Enriched Life Home Care Services

Education, Health & Fitness

5.088 Ratings

🗓️ 4 November 2025

⏱️ 27 minutes

🧾️ Download transcript

Summary

All Home Care Matters and our host, Lance A. Slatton were honored to welcome Pam Cusick as guest to the show.

 

About Pam Cusick, Senior Vice President at Rare Patient Voice:

 

Pam Cusick is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice's mission and vision. She hopes to expand Rare Patient Voice's panels to include all patients and caregivers who want to share their opinions and impact their disease category.

 

Pam earned a BA in Psychology from Sweet Briar College, and a MA in Psychology from the New School for Social Research. She is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. In addition, Pam has recently been named a Laureate by the Insights Association! This recognition, given by peers across the industry, is a true lifetime honor—and she is "still taking it all in."

 

As Senior Vice President, Pam's focus is on the continued growth and success of RPV, with an eye on client services, business development, and oversight of patient outreach, panel management, and marketing.

 

About Rare Patient Voice:

 

Rare Patient Voice, LLC connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies. These include surveys and phone interviews, online bulletin boards, focus groups, clinical trials, and more.

 

While RPV began with a focus on rare diseases, we now welcome patients and family caregivers living with all medical conditions. We currently cover more than 1,500 rare and non-rare diseases and conditions. Over the years, we have paid patients and family caregivers over $15 million for participating in research.

 

We work with thousands of organizations, patient advocacy groups, and individuals to spread the word about RPV. Since launching in the United States in 2013, RPV has expanded across the globe. We now recruit patients and caregivers for research studies in the United States, United Kingdom, Canada, Germany, Italy, France, Spain, Australia, and New Zealand.

 

 

Transcript

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0:00.0

Welcome to All Home Care Matters, the show where we discuss all things home care with discussions

0:06.7

on important age-related matters and topics. Brought to you by Enriched Life Home Care Services,

0:13.3

the number one rated home care provider in Michigan by Top Rated Local.

0:24.0

Hello and welcome back to All Home Care Matters.

0:26.7

If this is your first time visiting us here at the show, we want to say thank you for taking

0:30.2

time out to be with us today.

0:31.7

We appreciate how valuable everyone's time is, and that's why we try and make each episode

0:36.1

here at All home care matters,

0:37.9

something that will hopefully matter to you. Today, we are honored to welcome a remarkable guest,

0:43.3

Pam Cusick. She is a senior vice president at Rare Patient Voice. Welcome, Pam. How are you today?

0:49.9

I'm doing great. Thanks for having me. Oh, it's always our pleasure. You know, I want to start this off.

0:56.2

We had a meeting prior to today, and, you know, I was familiar with rare patient voice from a peripheral standpoint, but I didn't deeply understand it.

1:06.2

I want to first have you just kind of describe what rare patient voice is all about.

1:11.2

Sure. We connect patients and voice is all about. Sure.

1:12.0

We connect patients and caregivers with all kinds of research.

1:15.3

So we have a community of 180,000 patients and caregivers and they're in 1,500 different

1:20.8

conditions, some very rare, some not very rare.

1:25.4

And we connect them with opportunities to share their experiences with market research

1:31.5

so they can do focus groups, interview surveys with clinical trials, so they can participate

1:37.0

in clinical trials. They can also be involved in clinical trial co-designed. So that's where

1:42.8

they help researchers to plan clinical trials so that they make the most sense

1:50.0

that the clinical endpoints make sense for the patients, that the logistics make sense for the patients,

...

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