• Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • 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
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • 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

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
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • 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
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • 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 share their voices

Newsletter #8 – October 9, 2020

Rare Patient Voice Newsletter

What's New at Rare Patient Voice?

Study Results

While Rare Patient Voice does not have access to the results of studies conducted by our clients, we do conduct internal studies from time-to-time and share these results back with those who participated.  Here we will share some results from our study about patient and caregiver perceptions of advocacy groups and their roles in the recovery and treatment process where 3,455 Rare Patient Voice members contributed their feedback.  Thanks for participating!

A few key findings from this study include:

  • 46% of patients and caregivers were involved with an advocacy group.
  • 54% of patients and caregivers were not involved with an advocacy group.
  • Of those who were not involved in an advocacy group, there were several reasons noted:
    • 48.5% did not know of any relevant advocacy groups.
    • 26% did not have time to look for an advocacy group.
    • 19.5% had other support options and did not feel the need to work with an advocacy group.
  • 17.2% of patients and caregivers indicated that working with advocacy groups was inconvenient.
  • 12.1% would rather face their rare disease on their own.

Partner Corner

Rare Patient Voice is fortunate to have many fantastic partners.  In the Partner Corner, we will share a bit about our amazing partners.

EPIC Foundation

The EPIC Foundation provides support, advocacy, and tools to those affected by chronic illnesses.  The EPIC Foundation uniquely embraces the mind, body, and spirit, by focusing on key human issues such as trauma and loss. These are the vital issues that are commonly ignored while treating chronic illnesses.

Dr. Karen, founder and Executive Director of The EPIC Foundation, is inspired to be a voice for the voiceless “I want to encourage others to fight for their lives and to never give up.” To learn more about The EPIC Foundation, you can visit them here:

https://epictogether.org/birth-of-epic-foundation/

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 study.inquiries@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!

NUT Carcinoma Patients
55 min Phone Interview and Compensation is $85

Hepatocellular Carcinoma Patients and Caregivers
30 min Online Survey and Compensation is $75

Patent Foramen Ovale Patients
60 min Phone Interview and Compensation is $100

Ankylosing Spondylitis Male Patients
60 min Zoom Call and Compensation is $100

Non-Small Cell Lung Cancer Patients & Caregivers
30 min Online Survey and Compensation is $50

Tyrosinemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125

Familial Hypercholesterolemia Patients
45 min Phone Interview and Compensation is $75

Psoriatic Arthritis Patients
45 min Phone Interview and Compensation is $75

Alopecia Caregivers
30 min Online Survey and Compensation is $50

Glaucoma Patients
7 min Online Mobile Friendly Survey and Compensation is $20

Immune Thrombocytopenic Purpura Patients
60 min Web-Assisted Phone Interview and Compensation is $100

Ovarian or Fallopian Tube Cancer Patients
60 min Phone Interview and Compensation is $100

IgAN or aHUS Patients
60 min Phone Interview and Compensation is $125

Angelman Syndrome Patients or Caregivers
60 min Phone Interview and Compensation is $125

Pompe Disease Patients
30 min Web-Assisted Phone Interview and Compensation is $50

Breast Cancer Patients
10 min Online Survey and Compensation $25

Angelman Syndrome Caregivers
15 min Online Survey and Compensation $25

Pancreatic Cancer Patients
60 min Phone Interview and Compensation is $100

Non-Small Cell Lung Cancer Patients
60-min Telephone Interview and Compensation is $125 (+ $75 extra incentive for doctors note of diagnosis confirmation)

Ulcerative Colitis, Crohn's Disease, or Psoriatic Arthritis Caregivers of Pediatric Patients
60 min In-Person Interview in the Philadelphia area and Compensation is $150

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

  • Real & Rare with Sarah: The Stages of Life with a Rare Disease
  • Weekly Warrior: Meet Rachel
  • The Rare Disorder Podcast interviews RPV’s Wes Michael
  • Weekly Warrior: Meet Sam
  • Real & Rare with Sarah: Make Time for You

Check Out Our YouTube Channel!

https://youtu.be/cfjkqh5Ykp0
HTML tutorial

Read Our Newsletter

Read our Newsletter
What’s New at Rare Patient Voice?

Rare Patient Voice

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(443) 986-1949


Visit our international site, rarepatientvoice.global


Careers


For Patients

  • Learn about us
  • Vision, Mission and Core Values
  • Sign up to participate
  • Find us in the community
  • Read our blog for patients
  • Privacy Policy

For Related Groups

  • Are you an advocacy group for a rare disease?
  • Are you a researcher?
  • Read our blog for businesses

   Instagram

     

Rare Patient Voice, LLC, Market Research, Towson, MD

©2022. Rare Patient Voice. All Rights
Reserved. Privacy Policy. Disclaimers. Sitemap

©2022 . All Rights Reserved.

Copyright © 2022 · Genesis Framework · WordPress · Log in

Search Our Website

We use cookies to ensure the best experience with Rare Patient Voice. By clicking “Accept”, you agree to our privacy policy.
Privacy Policy   |    Cookies    |    Accept
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
Functional
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Others
Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
SAVE & ACCEPT