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: Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say? Here are a few responses from our patients with Pulmonary Arterial Hypertension (PAH):
- The biggest one saying that makes me cringe is “You don’t look sick,” because it definitely feels like it minimalizes my condition. And other times when I’m with my loved ones and we’re walking around and I’m extremely out of breath, it drives me crazy when they have to stop and gasp and ask me if I’m okay, as if I’m dying. It’s embarrassing, especially in public.
- This is a hard question, but some perceptions, I don’t like the fact that people will look at me and they’ll think that I was a former smoker and that’s why I’m on oxygen, or I’m overweight, that’s why I’m on oxygen, and a lot of times I’ve been berated getting out of a car in just a disabled person spot because they think I’m being lazy. This disease is very invisible, and without my oxygen, before I was actually on the oxygen, it was very difficult, but now with the oxygen it’s a little bit easier, but I think one thing that bothers me most is people go, “Just breathe.” Well, that’s not so easy. That’s about probably the thing that irks me the most because I’m trying, I just need time.
- Some of the things that make me cringe is when people say, “Well, can’t you just take a pill?” “Isn’t there a pill for that?” They sometimes get me confused with high blood pressure patients, unless I have high blood pressure. And sometimes I just get tired of explaining over and over and over again what I have.
Partner Corner
Elephants and Tea is a nonprofit media company with the mission to help adolescent and young adult (AYA) patients, survivors and caregivers know they are not alone in their fight with cancer.
The Elephant in the room is cancer. Tea is the relief conversation provides.
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
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.
