What's New at Rare Patient Voice?
RPV and Our Roots in the Patient Community
Did you know that many of our Rare Patient Voice staffers are patients or family caregivers themselves? Check out this video on the topic from Wes Michael, President and Founder of RPV, shared in celebration of our tenth anniversary.
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, Tiffany!
Partner Corner
The International Autoimmune Encephalitis Society, (IAES), is the only family/patient-centered organization for people with a diagnosis of Autoimmune Encephalitis. Leading with integrity, IAES strives to advance services, education, increase awareness and advance research for this group of diseases. The services we provide are all-inclusive from getting a timely diagnosis to recovery and the many challenges experienced in that journey. Learn more at:
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 Chantel Thompson, Senior Project Manager for Rare Patient Voice.
When Chantel was first introduced to Rare Patient Voice as a panelist years ago, she immediately thought, "Why doesn't everyone else know about this?" She was soon hired by the company as a Patient Advocate, a position in which she represented RPV at patient advocacy group events, spreading the word to patients and family caregivers about opportunities to take part in research. Living with Multiple Sclerosis herself, Chantel understands the daily struggles that patients and caregivers go through and is passionate about advocacy and working at Rare Patient Voice. She is now a Senior Project Manager and works with clients to ensure their project needs are met, and is passionate about RPV and her role.
“Rare Patient Voice gives patients and caregivers an opportunity to shape the future of medicine by having their voices heard. I am very proud to know that I am a part of a team that is making a difference in patients' lives,” she says.
In her off hours, Chantel enjoys traveling with her husband, white water rafter, celebrating Halloween, and spending time with her two cats, Salem and Boo.
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 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
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)
Amyloidosis: Hereditary (hTTR) or Amyloidosis: Wild-Type ATTR patients and caregivers United States
60-minute web-assisted zoom interview (WATI), compensation is $120
Bardet Biedl Syndrome (BBS) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $100
Basal Cell Carcinoma (BCC) or Cutaneous Squamous Cell Carcinoma (cSCC) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
Bladder Cancer, Gastric Cancer (Stomach Cancer), Head & Neck Cancer, Melanoma, Non-small cell Lung Cancer (NSCLC), Renal Cell Carcinoma, or Triple-negative Breast Cancer (TNBC) patients and caregivers United States
30-minute online survey, compensation is $60 Gift Card
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $100
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
Chronic Heart Failure or Congestive Heart Failure patients United States
60-minute web-assisted phone interview (WATI) via zoom, 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
Cognitive Impairment or Vision Impairment patients (Milwaukee, WI area) United States
60-minute focus group + pre-interview work, compensation is $165
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Complement 3 Glomerulopathy (C3G) Kidney Disease patients United States
20-minute online survey, compensation is $40
Cystic fibrosis (CF) patients (18+) United States
30-minute online survey, compensation is $50 electronic gift card
Cytomegalovirus (CMV) or Multifocal motor neuropathy (MMN) patients and caregivers United States
45-minute web-assisted phone interview (WATI), compensation is $90
Diabetes (DM) Type 1 or 2 or Obesity adolescent patients with caregiver United States
45-minute in-person interview, compensation is $175
Diffuse Large B Cell Lymphoma (DLBCL) patients United States
Duchenne Muscular Dystrophy (DMD) family caregivers United States
30-minute online survey, compensation is $60
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Essential tremor (ET) or Parkinsons patients using a Deep brain stimulation (DBS) United States
90-minute group interview by computer, compensation is $180
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Graft Versus Host Disease (GVHD) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Growth Hormone Deficiency (GHD) caregivers (of children 1-17) United States
10-minute online survey, compensation is $25
Hemolytic Disease of the Fetus and Newborn (HDFN) caregivers United States
Part 1 60-minute homework with 90-minute Follow Up Focus Group Part 2 2 Hour Reaction Group Interview, compensation from $240
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
Hereditary Hemochromatosis (HH) patients United States
45-minute web-assisted phone interview (WATI) + e-journal, compensation is $280
Hereditary Spastic Paraplegia (HSP) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
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 (IgA) patients United States
60-minute web-assisted phone interview (WATI), compensation is $125
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Metastatic Breast Cancer patients United States
25-minute online survey, compensation is $50
Myasthenia Gravis patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group (must participate in both, compensation is $240
Myelodysplastic syndromes (MDS) patients United States
Narcolepsy patients United States
75-minute web-assisted phone interview (WATI) + 20-minutes pre-work , compensation is $190
NASH (Nonalcoholic Steatohepatitis) patients (18+) United States
10-minute online survey, compensation is $25
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
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Nontuberculous Mycobacterial (NTM) patients United States Eligible study participants will be paid up to $450 ($300 for participation in a 2-hour study interview [can be completed in two 1-hour sessions] and $150 for an additional 1-hour study interview).
Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30
Overactive Bladder (OAB) patients (have used Botox) United States
60-minute web-assisted phone interview (WATI), compensation is $200
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
60-minute web-assisted phone interview (WATI) , compensation is $125
Parkinson's disease patients United States
25-minute online survey, compensation is $50
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
Progressive Supranuclear Palsy (PSP) patients and caregivers United States
20-minute voice response survey, compensation $45
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
Solid Tumor (NSCLC, Colorectal (Colon) Cancer, Pancreatic cancer, Liver Cancer) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $100
Thyroid Eye Disease patients United States
30-minute online screener, compensation is $60
Vasculitis patients United States
90-minute web-assisted phone interview (WATI), compensation is $158
Vision Impairment patients United States
60-120-minute web-assisted phone interview (WATI), compensation is $150
Wet Macular Degeneration patients United States
60-minute web-assisted phone interview, compensation is $120
United Kingdom
Amyloidosis patients United Kingdom
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $198.65
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD
HIV or Pre-exposure Prophylaxis (PrEP) patients United Kingdom
60-minute web-assisted phone interview (WATI) , compensation is 100 GBP
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
Amyloidosis patients Canada
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $275
France
HIV or Pre-exposure Prophylaxis (PrEP) patients France
60-minute web-assisted phone interview (WATI) , compensation is 115 EUR
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 80 EUR
Germany
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Germany
5-hour web-assisted phone interview (WATI), compensation is 250 EUR
HIV or Pre-exposure Prophylaxis (PrEP) patients Germany
60-minute web-assisted phone interview (WATI) , compensation is 115 EUR
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros
Italy
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Italy
5-hour web-assisted phone interview (WATI), compensation is 480 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.
