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 study focused on patient perceptions about patient advocacy groups and their roles in the recovery and treatment process, we surveyed 3,455 patients and caregivers from the Rare Patient Voice community. Below are some key findings:
- 46% of patients/caregivers have been involved with an advocacy group.
- 54% of patients/caregivers have not been involved with an advocacy group.
Reasons for not working with an advocacy group include:
- The findings revealed that even though advocacy groups for patients with rare diseases were being credited for their efforts in raising awareness about rare diseases in the community, many patients and caregivers were still unaware of them and the aid they could provide.
- Besides raising awareness about their goals, advocacy groups have to exert more effort in informing the community about their role in medical drug development.
- Advocacy groups need to reassure patients and caregivers that their motivations for partnering with biotech companies are not profit-driven, that they will remain impartial and independent, and that the patients' well-being will be their priority.
Partner Corner
A Breath of Hope for NMO
A Breath of Hope Foundation for Neuromyelitis Optica works to provide services for patients and their caregivers by empowering patients, providing services, building public awareness, educating patients and their caregivers, funding on-going neuromyelitis optica research and, by financially helping patients find and pay for services that they need. We want to help patients and caretakers get back on their feet and help them adjust to their new normal.
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 160 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 complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.
Please feel free to share this page with friends or family who be interested!
Diffuse Large B-Cell Lymphoma Patients and Caregivers
20 min Survey and Compensation is $100
Cytomegalovirus Patients for a Clinical Trial
Prurigo Nodularis Patients
90 min Web-Assisted Phone Interview and Compensation is $150
Generalized Pustular Psoriasis (severe subtype of Psoriasis) Canadian Residents
30 min Web-Assisted Phone Interview and Compensation is $50
Esophagus (Esophageal) Cancer Patients
75 min Web-Assisted Phone Interview and Compensation is $125
Allogeneic Hematopoietic Stem Cell Transplant Patients and Caregivers
60 min Web-Assisted phone Interview and Compensation is $100
Bullous Pemphigoid Patients Ages 70 Plus
60 min Web-Assisted Phone Interview and Compensation is $100
Psoriatic Arthritis MALE Patients
90 min Web-Assisted Phone Interview and Compensation is $125
Prostate Cancer Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Mantle Cell Lymphoma Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Alcohol use Disorder Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Adrenoleukodystropy Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $150
Hereditary Amyloidosis Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Patent Foramen Ovale (PFO) Patients
Two 45 min Web-Assisted Phone Interviews and Compensation is $150
Alpha 1 Antitrypsin Deficiency Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $90
Non Small Cell Lung Cancer Patients and Caregivers Canadian Residents
60 min Web-Assisted Phone Interview and Compensation is $100
Multiple Myeloma or Diffuse large B-cell lymphoma Patients
90 min Phone Interview and Compensation is $150
COPD Patients
45 min Web-Assisted Phone Interview and Compensation is $105
Alzheimer's Disease or Dementia Patients and Caregivers
45 min Web-Assisted Phone Interview and Compensation is $75
Neuromyelitis Optica (NMO) Patients
45 min Web-Assisted Phone Interview and Compensation is $75
Lung or Prostate Cancer Patients
Online Bulletin Board (3, 20-min Sessions) and Compensation is $125
Inclusion Body Myositis (IBM) Patients and Caregivers
60 min Diary / 60 min Interview and Compensation is $100 each Interview
Von Willebrand Disease Patients
30 min Online Survey and Compensation is $50
Scleroderma Patients
60 min Web-Assisted Phone Interview and Compensation is $125
Insomnia Patients
30 min Online Survey and Compensation is $50
Acute Lymphoblastic Leukemia (ALL) Patients and Caregivers
45 min Web-Assisted Phone Interview and Compensation is $75
Diabetic Peripheral Neuropathy MALE Patients
20 min Voice Response Interview and Compensation is a $40 Gift Card
Achondroplasia Caregivers
120 min Web-Assisted Phone Interview and Compensation is $200
Cervical Cancer Patients
60 min Web-Assisted Phone Interview and Compensation is $125
Hemophilia B Patients
30 min Online Survey and Compensation is $75
Multiple Myeloma Patients
30 min Phone Interview and Compensation is $75
Type 1 Diabetes Caregivers
90 min Web-Assisted Phone Interview and Compensation is $150
Thalassemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Bladder Cancer Patients
30 min Online Survey and Compensation is $50
High Cholesterol Patients (Statin Intolerant)
60 min Online Survey and Compensation is $100
Hemophilia A and B Patients UK Residents
60 min Web-Assisted Phone Interview and Compensation is £ 73
Systemic Lupus Erythematosus (SLE) MALE Patients
60 min Web-Assisted Phone Interview and Compensation is $125
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.
