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. In a recent study across 15 conditions, patients were asked a number of thought provoking questions about their conditions. One of the questions was: If you or your loved one’s experience living with this condition were a book, what would its title be and why? Here are a few responses from our patients with Multiple Sclerosis:
- If it were a book, “Living on the Edge.” Why would I title it that? Because I think of somebody teetering on the edge of something, physically standing on an edge and it’s kind of sink or swim at that point.
- The name of the book would be “Multiple Sclerosis: This is it.” The chapter I am currently in right now is, “Enjoy Life, but Not Too Much.” I chose that chapter title because things right now for me are very well. I recently got married. We want to buy a house soon. We want to have a child. So that’s where I’m at right now.
- I would title the book, “There is Hope.” And I would title the chapter that I’m currently in as, “Be Your Own Advocate” which I think is very, very important.
- My book about my life would definitely be called, “Hot Mess Express,” which is ok because I’m always laughing and I try to smile through everything.
- If I had to write a book, I would call it, “The Long Journey” because it is a journey.
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.
Project Invent is a national nonprofit empowering high school students across the country to invent technologies for social impact. We pair community partners with teams of high school students to share their stories and partner to invent impactful solutions. Past student teams have created everything from smart wallets to help individuals with visual impairments detect bill denominations to autonomous shopping carts for wheelchair users. At the end of the year students pitch their inventions to top investors and sometimes move on to get a patent!
We’re always looking for exciting challenges for students to tackle and inspiring people for students to meet and are currently looking for partners to work with students teams this year. If you think this is something you would be interested in please follow the link below to learn more and sign up!
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
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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.
- 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
- 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
Tyrosinemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125
Ovarian or Fallopian Tube Cancer Patients Canadian Residents ONLY
60 min Phone Interview and Compensation is $100
Breast Cancer Patients
10 min Online Survey and Compensation $25
Insomnia Patients
60 min Web-Assisted Telephone Interview and Compensation is $100
Chronic Myeloid Leukemia Patients
30 Minute and Compensation $50
Asthma and COPD Adult Patients
30 min Survey and $20 Compensation
Foster Care
Looking for those who were in Foster Care
Online Survey 15 minutes and $25 compensation
Non-Small Cell Lung Cancer Canadian Patients
60 min Online Survey and Compensation is $100
Diffuse Large B-Cell Lymphoma or Follicular Lymphoma Patients
5 day online bulletin board (15-20 mins per day) plus 60 min Phone Interview and Compensation is $350
Small Cell Lung Cancer Patients
60 min Web-Assisted Survey and Compensation is $100
X-Linked Retinitis Pigmentosa Patients and Caregivers
60 min Web-Assisted and Compensation $100
Plaque Psoriasis Patients
45 min Online Survey and Compensation is $63
Plaque Psoriasis Patients
$15 initial reward with a $15 monthly reward possible based on participation
Bladder Cancer Stage Patients
45 min Web-Assisted Phone Interview and Compensation is $75
Fabry Disease Patients
60 min Phone Interview Plus Homework and Compensation is $150
Cushing's Disease Patient and Caregivers
75 min Phone Interview Plus Homework and Compensation is $225
Hormonal Insufficiency Patients and Caregivers
60 min Webcam Interview and Compensation is $125
Seizure Clusters Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Muscle-Invasive Bladder Cancer Patients
60 min Phone Interview and Compensation is $150
Narcolepsy Patients
45 min Online Survey and Compensation is $75
Hodgkin's Lymphoma Patients and Caregivers
30 min Online Survey and Compensation is $50
Follicular Lymphoma Patients
50 min Web-Assisted Phone Interview and Compensation is $100
Idiopathic Hypersomnia Patients
60 min Online Survey and Compensation is $100
Hemophilia B Patients
60 min Webcam Interview and Compensation is $100
Patients on PrEP
20 min Online Survey and Compensation is $35
Nail Psoriasis Patients
45 min Phone Interview and Compensation is $150
Transthyretin Cardiac Amyloidosis (ATTR-CM) Patients and Caregivers
60 min Phone Interview and Compensation is $150
Bladder and Urothelial Cancer Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $75
Chronic Kidney Disease Patients and Caregivers
Patients- 4 week Online Community and Compensation is $400
Caregivers - 2 week Online Community and Compensation is $200
Pulmonary Arterial Hypertension Caregivers
App download and use 4 weeks then delete and Compensation is $50
Myelofibrosis Patients
60 min Phone Interview and Compensation is $100
Tardive Dyskinesia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Ovarian Cancer Patients
25 min Online Survey and Compensation is $45
Hereditary Angioedema (HAE) Patients
10 min Surveys and Compensation is $20
Chronic Kidney Disease Patients
60 min Phone Interview and Compensation is $100
ALS Patients or Caregivers
30 min Online Survey and Compensation is $50
Warm Autoimmune Hemolytic Anemia
75 min Phone Interview and Compensation is $150
Non-Small Cell Lung Cancer Patients
30 min Web-Assisted Phone Interview and Compensation is $50
Eosinophilic Esophagitis (EOE) Patients
30 min Online Survey and Compensation is $50
Nasal Polyps Patients
30 min Online Survey and Compensation is $50
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 seven years, Rare Patient Voice has paid patients over $5.3 Million dollars.
