What's New at Rare Patient Voice?
It’s Our Tenth Anniversary!
This month we are celebrating our tenth anniversary of connecting patients and family caregivers with opportunities to take part in research studies. The company was founded on July 14, 2013 by veteran market research executive Wes Michael.
“It’s been an amazing ten years. What started as a ‘good idea’ blossomed into reality, with clients embracing our ability to connect them with the quality respondents they needed for impactful studies, and patients and family caregivers eager to be heard by decision makers,” said Wes recently.
For more reflections on his experience in launching Rare Patient Voice, building it from a start up into a growing business, and lessons he learned along the way, this video from Wes can be viewed on the RPV Youtube channel.
News About Payments
Electronic direct deposit can be a faster, more convenient option for receiving payments. After a Rare Patient Voice panel member completes a study and receives notification that a check has been sent, included in that notification will be a link the panel member may use to sign up for future electronic payments (ACH transfers). RPV is providing this option in conjunction with Inflow. For more on the electronic payment option, check out this video.
We Value Your Time
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Lori!
Partner Corner
We’re SOLUtion, a specialty pharma company building all-in-one drug and device platforms that complement patients' lifestyles, not define them. Learn more about our harmonized approach to developing drugs and devices in tandem, and partner with us to build better SOLUtions for the patients who need them most.
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! This month, meet Missy Smith, Patient Advocacy Assistant for Rare Patient Voice.
Born and raised in Alabama, Missy joined Rare Patient Voice in 2022. She and her husband make their home near Tuscumbia, AL and have four kids and three grandchildren. A detail-oriented, customer service-driven individual, her position as Patient Advocacy Assistant at RPV gives her the opportunity to use both skills, and she loves being part of the Patient Advocacy team.
“To say that I am proud to work at RPV is an understatement! I am honored to work for a company that provides an environment of safety, acceptance, encouragement, reassurance that my voice is heard, a sense of family, and so much more,” Missy says. “I have a son with epilepsy and know first hand what it is to struggle with the effects of such a debilitating disease. RPV is truly an advocate for patients and caregivers and the best job I've ever had!”
When not connecting with patients and family caregivers, Missy can be found planning road trips with her family, reading, crafting, and enjoying life with a Shih Tzu who rules her house.
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.
1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com
2. If you are NOT a member, please click here to 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 might be interested!
United States
Acute Hepatic Porphyria (AHP) patients United States
30-minute web-assisted phone interview, compensation is $60
Achondroplasia caregivers (children between the ages of 12-20) United States
60-minute web-assisted phone interview, compensation is $125
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Acute Lymphocytic Leukemia (ALL) patients United States
Year long study, 60-minute web-assisted phone interviews (WATI), compensation is $150 per interview
Adult Growth Hormone Deficiency (AGHD) or Turner Syndrome patients and caregivers United States
90-minute web-assisted phone interview (WATI), compensation is $250
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Aortic Stenosis patients United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia (Cooley’s Anemia) (patients who do not receive regular transfusions as part of their medical treatment and must be able to provide proof of diagnosis) United States
60-90 minute web-assisted phone interview, compensation $75 for confirmation of diagnosis + $125 for interview
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $100
Bladder Cancer patients United States
60-minute web-assisted phone interview (WATI) , compensation is $120
Breast Cancer patients (HR+/HER2-) United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer patients (HR+ and TNBC) United States
30-minute online survey, compensation is $60
Cervical Dystonia or Spasticity patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Kidney Disease (CKD) and Diabetes (DM): Type 2 patients (45-78 year olds currently using a branded product (Kerendia, Farxiga, or Invokana) United States
45-minute web-assisted phone interview (WATI) , compensation is $90
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Cutaneous Lupus Erythematosus (SCLE) or Discoid Lupus Erythematosus (DLE) patients United States
5 hour in-person interview in Boston, MA (7/22 and 7/29), compensation up to $700
Cytomegalovirus (CMV) patients and caregiver United States
60-minute web-assisted phone interview (WATI), compensation is $120
Diabetes (DM) Type 1 or 2 or Obesity adolescent patients with caregiver United States
45-minute in-person interview, compensation is $175
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Follicular Lymphoma (Relapsed-refractory) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Gestational Diabetes patients United States
30-minute web-assisted phone interview, compensation is $60
Graft Versus Host Disease (GVHD) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Hemophilia A (Factor VIII, FVIII) patients (Hemlibra users) and caregiver United States
30-minute web-assisted phone interview (WATI), compensation is $60
Hemophilia A or B patients United States
30-minute online survey, compensation is $60
Hemophilia caregivers of children 17 years old United States
60-minute web-assisted phone interview, compensation is $100
Huntington's Disease patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Limb Girdle Muscular Dystrophy (LGMD) patients United States
60-minute web-assisted phone interviews, compensation is $100
Metastatic Breast Cancer patients United States
25-minute online survey, compensation is $50
Multiple Sclerosis (MS) male patients (21-65 years) United States
35-minute online survey, compensation is $70
Myasthenia Gravis patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group (must participate in both, compensation is $240
Myasthenia Gravis (MG) patients (diagnosed in last 3 years) United States
15-minute online survey, compensation is $35
Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
Non-Small Cell Lung Cancer (NSCLC) AAPI female patients or caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30
Pancreatic Cancer patients United States
90-min web-assisted phone interview (plus a 30-min homework assignment) compensation is $225
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview (WATI), compensation is $200
Prostate Cancer patients United States
60-minute web-assisted phone interviews, compensation is $150
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Ulcerative Colitis (UC) patients United States
35-minute online survey, compensation is $50
United Kingdom
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD
Canada
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
France
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Germany
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Frequently Asked Questions
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?
As of January 1, 2023, you will earn $120 per hour (typically) for participating in new 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. RPV has paid patients and family caregivers over $13 million dollars since 2013 for participating in research studies.
