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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
  • For Patients
    • Study Opportunities for Patients and Caregivers
    • Sign Up to Participate
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Advocacy Groups
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • 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 Voice Their Opinions

Newsletter #1 – June 15, 2020

Rare Patient Voice Newsletter

What's New at Rare Patient Voice?

Free 90-day Meditation App

Dealing with COVID-19 has been even more difficult for patients with rare and chronic conditions and their families. To try to ease some stress, we have partnered with Cloud 9 to provide you with a free meditation app called MediMind for 90 days. We hope you can use these meditations to provide comfort during this difficult period. Please download and share with your friends and loved-ones. Access a link here and enjoy:

Get App

Referrals?

Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
https://rarepatientvoice.com/become-a-referral-partner/

Current Study Opportunities

We currently have over 100 studies open for patients and caregivers!  A few of the studies we are working to fill immediately are listed below.

  1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact Debi Crist at debi.crist@rarepatientvoice.com
  2. If you are NOT a member, please click on the study name to complete the sign-up process and include all medical conditions to be considered for that study and any other relevant studies.

Please feel free to share the link with friends or family who may qualify, and they’ll be invited to join Rare Patient Voice and invited to take part in the study!

Please note: These studies may no longer be open. For the latest studies, please visit the Study Opportunities page.

Von Willebrand Disease Patients & Caregivers
25 min Online Survey and compensation is $45

Pancreatic Cancer Caregivers
Caregivers of those that have passed away that were diagnosed with Pancreatic Cancer.
The study consists of two 60-second videos and compensation is $500

Alzheimer's or Mild Cognitive Impairment Patients & Caregivers
60 min phone interview and compensation is $100

Plaque Psoriasis Patients
This is an Online Bulletin Board - 20 minutes per day for three days and compensation is $150

Rheumatoid Arthritis
This is an Online Bulletin Board - 20 minutes per day for three days and compensation is $150

Mantle Cell Lymphoma Patients & Caregivers
60 min web-assisted phone interview and compensation is $100

Hyperoxaluria Type 1 Adult Patients or Caregivers of Children
60 min phone interview and compensation is $100

Female Breast Cancer Stage IV Patients
60 min phone web-assisted phone interview and compensation is $150

Feedback Request

Thanks for reading our first newsletter. We hope you liked it! We are interested in learning more about what you would like to see in our next newsletter. Please click on this link to share your thoughts:
Link

Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.

How will I be paid?
You will earn $100 per hour for participating in studies.  We pay by check to ensure patients can use their compensation in any way they wish.

How will I be paid?
You will earn $100 (USD) per hour for participating in studies.  We pay by check to ensure patients can use their compensation in any way they wish.

About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition.  Over the past eight years, Rare Patient Voice has paid patients over $6 Million dollars.

To read more newsletters, click here.

Latest Blog Posts

  • RPV Basics
  • How much detail to reveal in survey invitations?
  • Impact of the Covid-19 Pandemic on Rare Disease Patients and Caregivers
  • Join Rare Disease Day 2021
  • Is Telehealth Here to Stay?

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What’s New at Rare Patient Voice?

Recent Patient

“I’ve had excellent interactions with the staff. The surveys are usually somewhat fun and feel like you’re actually helping someone or developing something new. They’ve always followed through on payment and I appreciate all the opportunities.”

Rare Patient Voice

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Towson, Maryland 21286
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(410) 218-0527

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