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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

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Xpectives.Health
June 7, 2019You Ask We Answer, Why Video, English

Three Reasons Why You Should Consider Patient Videos

Read More
By Wes Michael0
June 7, 2019You Ask We Answer, Referral Program, English

How does RPV’s Referral Program Work?

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Why Video, English

WHY VIDEO? Why Such An Emphasis On Video

Hi, this is Wes again. You ask why video? Why are we doing a lot of work now with videos? Well, our business was based on face-to-face contact. We meet ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, GEO RESPONDENT, English

UNITED STATES: Are RPV’s Panelists Spread Across the U.S.?

UNITED STATES: Are RPV’s Panelists Spread Across the U.S.? Are RPV’s Panelists Spread Across the U.S.? We get several variations of this question. Since many people know we recruit patients ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, DRUG ADVERTISING, English

TV ADVERTISING: Should TV Ads Reveal Drug Prices?

Hi this is Wes again from the studios of Rare Patient Voice. I want to bring to your attention some information I read in a recent March issue of MM&M ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Respondent Fraud, English

RESPONDENT FRAUD: What Does RPV Do To Prevent It?

How do you prevent fraudulent respondents? This is a very important question. All of marketing research is based on having the sample that we require. If we want to survey ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, HOW WE RECRUIT, English

RECRUITING: How Do We Recruit Cancer Patients?

How do you find cancer patients? As horrible a group of diseases as cancer is, there have been great improvements in treatments over the past few years. We can see ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Pete Rose, English

PETE ROSE: Why Is Wes Such a Big Fan?

Hi, this is Wes. I have a very special treat today. For those of you who saw the video that was posted recently, courtesy of Michael Halberstam, of Pete Rose ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Patient Advocate, English

PATIENT ADVOCATE: What Is A Patient Advocate?

What is our Patient Advocate Team? This is one of my favorite new developments at Rare Patient Voice over the past couple of years. When I started Rare Patient Voice ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, PARTNERING WITH RPV, English

Partnering : How Can I Partner With RPV?

Greetings everyone. Thanks for wanting to learn more about partnering with Rare Patient Voice. As an advocacy group, we want you to help us get the word out to your ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Parkinson's Disease, English

PARKINSON’S DISEASE: Is There A Treatment For Parkinsons Disease?

Hi, Wes here. I was reading an article in our local newspaper and I wanted to bring it to your attention. It’s exciting news, I think. About new potential treatment ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, No Shows, English

NO-SHOWS!: What Does RPV Do About No-Shows?

As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour. What do I least like to hear about – No-shows! When ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Getting Paid, English

Getting Paid Will I Really Make $100/Hour

As of 2023, for new studies, patients and family caregivers will be paid at a rate of $120 per hour. For studies already posted and/or otherwise in progress, the rate ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, HOW WE GET FEEDBACK, English

FEEDBACK: What Feedback Does RPV Get From Clients?

What feedback do you get from clients? Feedback from clients is so useful to us! How else can we learn what we are doing right and where we need to ... READ MORE

Read More
By Wes Michael0
June 1, 2019You Ask We Answer, Drug Categories, English

DRUG CATEGORIES: What Are the Hot New Ones?

Are we in the golden age of orphan drug development? As I’m recording this on Groundhog Day, the FDA groundhog must not have seen his shadow, he’s come out of ... READ MORE

Read More
By Wes Michael0
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