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 Schizophrenia and their caregivers:
- I would tell myself to realize that you’re not alone in this fight, that there are others, so many others, that are going through the same thing with their loved ones, to find as many support people.
- Well if I could travel back in time and meet the person that or talk with the person, loved one when he was first diagnosed, the advice I would give to him is that I know that this is scary, and this is not something that you probably understand. But trust me as your mother to allow you to be successful and be able to move forward in your life. And it may be scary, just trust me. And then I would describe my son as a person that probably felt afraid. He felt afraid about what was changing to him and what’s happening to him, and the voices that he started hearing.
- If I can travel back in time with a loved one I’ve had empathy and compassion more than ever, because then I know what they’re dealing with such as myself on a daily basis, dealing with the public and family.
- I would tell the person that no matter what they go through in life, as long as you have will and determination, you can get through anything. I would tell him how much I love him. I would spend more time with him one-on-one. I would have more activities, do more activities with him. But I would also just advise him more about his personal value and try to raise his self-esteem enough so that he can endure all the troubles that come and the hardships that come with this disorder.
- If I could go back in time and meet the person I was when I was first diagnosed, I would let them know that it’s going to be okay, and that all of the trials and errors are going to be worth it in the end. And it’s a lot easier to deal with now.
Partner Corner
The Center for Chronic Illness is a nonprofit organization based in Seattle, Washington. Our mission is to promote well-being and decrease isolation for those impacted by chronic illness through support and education. CCI focuses on three main pillars in providing support and education to the chronic illness community: Emotional Well-being, Health Education, and Community. For more information: https://www.thecenterforchronicillness.org.
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
Foster Care - Looking for those who were in Foster Care
Online Survey 15 minutes and $25 compensation
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
Fabry Patient
60 min Phone Interview and Compensation is $150
Muscle-Invasive Bladder Cancer Patients
60 min Phone Interview and Compensation is $150
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
Diffuse Large B-Cell Lymphoma Patients
20 min Online Survey and Compensation is $100
Idiopathic Hypersomnia or Narcolepsy Patients
60 min Online Survey 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
Bladder Cancer or Urothelial Cancer Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Warm Autoimmune Hemolytic Anemia Patients
75 min Web-Assisted Phone Interview and Compensation is $150
Gorlin Syndrome Patients
30 min Web-Assisted Phone Interview and Compensation is $100
Bladder Cancer Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Sickle Cell Disease Caregivers of patients ages 12-17
60 min Web-Assisted Phone Interview and Compensation is $100
Kidney Transplant Patients
60 min Phone Interview plus 45 minute pre-work and Compensation is $275
Hemophilia B Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
SMA Caregivers aged 0-2
30 min Online Survey and Compensation is $50
Hereditary Hemochromatosis Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Erythropoietic Protoporphyria (EPP) or X-linked protoporphyria (XLP) Patients and Caregivers
60 min Phone Interview and Compensation is $100
Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) Patients and Caregivers
60 min Phone Interview and Compensation is $100
Hemophilia B Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Psoriasis Patients Canadian Residents
5-hour Online Bulletin Board (1-hour per day) and 5-hour long Journal (mailed) and Compensation is $1000
Multiple Myeloma Patients
25 min Online Survey and Compensation is $40
PKU Patients
45 min Web-Assisted Phone Interview and Compensation is $75
Metachromatic Leukodystrophy Patients and Caregivers
60 min Phone Interview and Compensation is $100
Plaque Psoriasis Patients
15 min Online Survey and Compensation is $25
Polymyositis or Dermatomyositis Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Lung Cancer Male Patients
10 min Online Survey and Compensation is $20
Myelofibrosis Patients
60 min Webcam Interview and Compensation is $100
Breast Cancer patients
60 min Web-Assisted Phone Interview and Compensation is $100
Prostate Cancer Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Osteoporosis Patients in the US or UK
60 min Web-Assisted Phone Interview and Compensation is $70
Achondroplasia Caregivers
30 min Online Survey and Compensation is $50
Catheter Patients
15 min Mobile Friendly Online Survey and Compensation is $25
Duchenne Muscular Dystrophy Caregivers
60 min Online Survey and Compensation is $100
Metachromatic Leukodystrophy Caregivers
60 min Phone Interview and Compensation is $100
Multiple Myeloma Patients
30 min Online Survey and Compensation is $50
Chronic Kidney Disease or Heart Failure Patients Canadian Residents
60 min Phone Interview and Compensation is $100
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.
