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: Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now? Here are a few responses from our patients with Narcolepsy:
- I would tell myself not to feel so guilty when I was wanting to sleep a lot, that it wasn’t because I was being lazy or not wanting to be social, it was because I was actually tired.
- You can’t do it all. You can’t be like everybody else because they don’t have narcolepsy. Pulling an all-nighter is not a good idea because you won’t bounce back from it like everybody else would naturally. Don’t worry about what everybody else is doing. Do you, and you’ll be fine.
- It makes a lot more sense when I was first diagnosed of what was going on because I didn’t understand the daytime sleepiness. I probably wouldn’t have drank as much caffeine as I did when that happened because I was trying to make up for it. I would go back and not drink nearly as much caffeine and probably had gone to a doctor earlier than what I had, had I known what was the problem.
Partner Corner
The Norma Leah Ovarian Cancer Initiative’s mission is to enrich lives through early detection education, patient support services and research funding for ovarian cancer — the silent killer of women. Our goal is to empower all women (and those who love them) to recognize the subtle symptoms of ovarian cancer, to assess their personal risk, to explore risk-reduction strategies and to advocate for proper medical attention for the best outcome. Our efforts are contributing to reduced incidence and mortality rates of ovarian cancer.
We dream of the day when a screening test is developed, and it becomes a routine part of every woman’s annual wellness exam. For more information please visit: https://www.normaleah.org/
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
https://
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
60 min Phone Interview and Compensation is $100
Breast Cancer Patients
10 min Online Survey and Compensation $25
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
Prostate Cancer Patient & Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Bladder Cancer Patients
45 min Web-Assisted Phone Interview and Compensation is $75
Hormonal Insufficiency Patients and Caregivers
60 min Webcam Interview and Compensation is $125
Epilepsy - Cluster Seizure Patients & Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Muscle-Invasive Bladder Cancer Patients
60 min Phone Interview and Compensation is $100
Hodgkin's Lymphoma Patients & Caregivers
30 min Online Survey and Compensation is $50
Hemophilia B Patients
60 min Webcam Interview and Compensation is $100
Small Cell Lung Cancer Patients
60 min Web-Assisted Phone 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 & Caregivers
60 min Phone Interview and Compensation is $150
Bladder Cancer Patients
60 min Web-Assisted Survey and Compensation is $75
Pulmonary Arterial Hypertension (PAH) 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 & Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125
Ovarian Cancer Patients
25 min Online Survey and Compensation is $45
ALS Patients or Caregivers
30 min Online Survey and Compensation is $50
Eosinophilic Esophagitis (EOE) Patients
30 min Online Survey and Compensation is $50
Warm Autoimmune Hemolytic Anemia Patients
75 min Phone Interview and Compensation is $150
Nasal Polyps Patients
30 min Online Survey and Compensation is $50
Gorlin Syndrome Patients
30 min Web-Assisted Phone Interview and Compensation is $100
Paroxysmal Nocturnal Hemoglobinuria (PNH) Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Kidney Transplant Patients
60 minute interview plus 45 minute pre-work and Compensation is $275
Hemophilia B Patients & Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
SMA caregivers aged 0-2
30 min Online Survey and Compensation is $50
Catheter Patients
15 min Online Survey and Compensation is $25
Hereditary Hemochromatosis Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Erythropoietic Protoporphyria (EPP) or X-linked protoporphyria (XLP) Patients & Caregivers
60 min Phone Interview and Compensation is $100
CIDP Patients & Caregivers
60 min Phone Interview and Compensation is $100
Ovarian and/or Fallopian Tube Cancer Patients
75 min Web-Assisted Phone Interview and Compensation is $125
Hemophilia B Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Multiple Myeloma Patients
25 min Online Survey and Compensation is $45
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.
