What's New at Rare Patient Voice?
Study Results
Where do you get your medical information? In a recent RPV study of 735 loved ones caring for a family member with a rare disease, Google was cited as the number one information source being utilized.
Didn’t Qualify for a Study? We Still Value Your Time
We appreciate your participation and being part of the RPV community, even if you didn'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, Yuliya!
Partner Corner
CF Vests Worldwide donates Cystic Fibrosis therapy vests globally, providing more days to enable more lifetime opportunities for CF patients in our international community. Visit us for more information at https://www.cfvww.org/, or on Instagram at https://www.instagram.com/cfvww/.
Staff Spotlight
Skyler Swagart joined Rare Patient Voice in 2021 as a Data Specialist and Outreach Associate. He graduated with a BA in Digital Media: Game Design from the University of Central Florida. Skyler is now an RPV Patient Advocacy Associate who processes incoming patients and family caregivers who sign up for our panel, and also does profile database training for associates new to the company. He values his colleagues and the supportive working environment at RPV.
"My favorite part about working at Rare Patient Voice is our teamwork and communication. Whenever someone has a question, either within the team or between departments, everyone responds with swiftness and kindness. Despite our being remote, I can see that we all care about our work even through the screen, and it's a great feeling!"
In his off hours, Skyler enjoys painting and drawing, playing video games, rock climbing, and spending time with Randall, his pet snake.
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
Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States
Participate in a 5-minute survey for a medical history platform.
Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 10-17) in the United States
Join a 120-minute in-person interview. Compensation is $565 to $835.
Acute Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alzheimer’s Disease or Cognitive Impairment patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Amyotrophic Lateral Sclerosis (ALS), Aphasia, Stroke patients and caregivers in San Diego, CA; San Francisco, CA; Phoenix, AZ United States
60-minute in-person interview, compensation is $150/patient and $150/caregiver
Atherosclerotic Cardiovascular Disease (ASCVD) patients in the United States
Participate in a 3-year Advisory Board with compensation based on your level of involvement.
Atopic Dermatitis, Vitiligo patients United States
Participate in a 3-year Advisory Board with compensation based on your level of involvement
Breast Cancer: Metastatic, TNBC, and HR+/HER2- patients in the United States
25-minute online survey, compensation is $50
Bullous Pemphigoid patients United States
90-minute web-assisted phone interview plus a 60-minute online diary, compensation is $180 for the interview and $120 for the online diary
Chronic Kidney Disease (CKD), Diabetes, High Blood Pressure African American patients in Atlanta, GA or Detroit, MI United States
150-minute in-person interview, compensation is $450
Chronic Myeloid (Myelogenous) Leukemia (CML) patients and caregivers United States
30-minute online survey, compensation is $60
Chronic Spontaneous Urticaria male patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Crohn’s Disease, Diabetes, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis caregivers of children in Philadelphia, PA United States
75-minute in-person interviews, compensation is $225
Eczema (Atopic Dermatitis) caregivers of patients under age 18 United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer: African American patients and caregivers professionally diagnosed and living in the United States
90-minute focus group (for both patients and caregivers), plus a 30-60 minute pre- and post-task (patients only). Compensation is $175 for caregivers and $350 for patients.
Eosinophilic Esophagitis (EOE) patients United States
120-minute online bulletin board, compensation is $240
Epilepsy patients United States
45-minute online survey, compensation is $120
Esophageal Cancer, Gastroesophageal Junction Cancer, Stomach (Gastric) Cancer patients and caregivers United States
30-minute online survey, compensation is $90
Esophageal Cancer, Stomach Cancer patients United States
30-minute online survey, compensation is $60
Esophageal Cancer, Stomach Cancer patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Exocrine Pancreatic Insufficiency patients United States
10-minute online survey, compensation is $30
Fragile X Syndrome patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Gastroenteropancreatic Neuroendocrine Tumor (GEP-NETs) patients United States
120-minute web-assisted phone interview, compensation is $120
Generalized Pustular Psoriasis patients United States
6-hour advisory board plus travel time, compensation is $95 per hour
Graft Versus Host Disease (GVHD) patients and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Heart Disease patients who have had a valve replacement United States
60-minute web-assisted phone interview, compensation is $120
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
Hypertrophic Obstructive Cardiomyopathy (HOCM) patients in the United States
4-week passive metering app, compensation is $120
Idiopathic Hypersomnia (IS) patients United States
10-minute online survey, compensation is $25
Idiopathic Pulmonary Fibrosis (IPF) patients and caregivers in CA, GA, IL, NC United States
120-minute in-person interview, compensation is $400
IgA Nephropathy (Berger'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
Multiple Myeloma patients United States
75-minute web-assisted phone interview, compensation is $175
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
25-minute online survey, compensation is $50
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Neuromyelitis Optica Spectrum Disorder (NMOSD), Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), Thyroid Eye Disease (TED) Patients and family caregivers in Chicago, Cincinnati, Columbus, Raleigh, and Charlotte United States
60-minute in-person interview
Obesity patients who have participated in a clinical trial United States
60-minute online survey, compensation is $120
Osteoporosis/Osteopenia patients who currently use or have used Forteo United States
60-minute in-person interview, compensation is $180
Pancreatic Cancer African American patients and caregivers (any ethnicity) United States
60-minute web-assisted phone interview, compensation is $150
Phenylketonuria (PKU) caregivers for ages 12-17 United States
60-minute web-assisted phone interview plus homework assignment (less than 30-minutes), compensation is $300
Postpartum Depression (PPD) patients who have taken Zurzuvae United States
60-minute web-assisted phone interview, compensation is $120
Prurigo Nodularis (PN) patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Prurigo Nodularis (PN) patients United States
40-minute online survey, compensation is $80
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $62.50
Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 10-minute pre-work assignment, compensation is $150
Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
United Kingdom
Colorectal (Colon) Cancer patients United Kingdom
75-minute web-assisted phone interview, compensation is 113 GBP
Epilepsy patients and caregivers United Kingdom
25-minute online survey, compensation is 38 GBP
Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
Sickle Cell Disease (SCD) caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 90 GBP
Canada
Ovarian Cancer patients Canada
60-minute web-assisted phone interview, compensation is 80 CAD
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Canada
60-minute online bulletin board, compensation is 120 CAD
Germany
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
Idiopathic Pulmonary Fibrosis (IPF) patients Italy
30-60 minute web-assisted phone interview given in English, compensation is $120 USD (110 EUR)
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
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?
You will earn $120 (typically) per hour for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.
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.
