• Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • Press Releases
  • 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
  • Videos
    • Meet The Patients
    • You Ask, We Answer
    • Get To Know
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • 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
    • Press Releases
  • 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
  • Videos
    • Meet The Patients
    • You Ask, We Answer
    • Get To Know
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • 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

My name is Jessica and I’m an RPV Patient Panelist who’s overcoming Kugelberg Welander disease

I have spinal muscular atrophy type 3, also known as Kugelberg Welander disease. I do patient surveys on Rare Patient Voice. And I really enjoy and appreciate the extra money a lot. Also, I find the questions very helpful. And they also are very detailed.

They really get to the bottom of every aspect of every kind of question you could try to think of. They are very thorough. Let's just-- yeah, thorough would be the good word. And asking every question you might have and answering-- and getting your answer of what you think should work best for, like, drug treatments or whatever your condition may be.

Living with my spinal muscular atrophy type 3 day to day is a struggle. But you learn the easier ways to get by with the abilities you have. Hey, if you're interested in doing Rare Patient Voice and have a rare disease or condition, then do it. It broadens your knowledge and also gets your voice out there for others to know, hey, this is working or this isn't working. So it's a great opportunity.

More Patient Videos

Latest Blog Posts

  • Rare Patient Voice Expands to Europe
  • Thanks to We’re Not Drunk, We Have MS, our Terrific MS Partner
  • Thanks to WhatNext, Our Terrific Cancer Patient Partner
  • The North Wind and the Sun
  • Should companies do marketing to their market research panels?

Check Out Our YouTube Channel!

https://youtu.be/kPihaNOjekw
HTML tutorial

Read Our Newsletter

Read our Newsletter
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

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(410) 218-0527

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

        
   

Rare Patient Voice, LLC, Market Research, Towson, MD
©2020. Rare Patient Voice. All Rights
Reserved. Privacy Policy. Disclaimers. Sitemap

©2021 . All Rights Reserved.

Copyright © 2021 · Genesis Framework · WordPress · Log in

Search Our Website