What's New at Rare Patient Voice?
Study Results
According to a recent Rare Patient Voice survey, 8 out of 10 people in the rare disease community experience emotional distress that impacts their daily lives. When mental health issues go unaddressed, patients are less likely to stay on their medications, more likely to visit the ER, and less likely to remain enrolled in clinical trials.
Read more in the RPV white paper, The Critical Need to Address Mental Health in the Rare Disease Community, which presents research findings from the study of 958 U.S. rare disease patients and caregivers, revealing that 82.4% experience frequent emotional distress that interferes with their daily lives.
Your Time Is Valued, Even If You Didn’t Qualify
Your time is valued, whether you qualify for a study or not. Each month we automatically enter those who tried but did not qualify for a study into a drawing for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Tyesha P.!
Partner Corner
Inspired by a cancer recovery story, Maitri empowers patients to activate their community in support of their care. We use technology to help patients stay organized and motivated, while building a long lasting circle of social support. Our app is a simple, thoughtful tool for patients to be proactive about their needs, ask for and manage help from those around them. Creating a safe third space for patients to be vulnerable, and a place for their community to show up for them in a meaningful way when they need it most. Website: https://www.maitrihelp.com/
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 and up to $90 per year for caregivers who complete brief surveys about their child's health
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Alopecia Areata (AA) patients United States
30-minute online survey, compensation is $60
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
30 or 45 minute interview, compensation is $60 for the 30-minute interview and $90 for the 45-minute interview
Ankylosing Spondylitis (AS), Juvenile Arthritis (JA): Juvenile Idiopathic Arthritis (JIA), Juvenile Arthritis (JA): Juvenile Rheumatoid Arthritis (JRA), Psoriasis: Plaque, Psoriatic Arthritis (PsA) caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Asthma, Eczema (Atopic Dermatitis), Eosinophilic Esophagitis (EOE), Perennial Allergic Rhinitis caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Asthma patients in the Nashville, TN area United States
120-minute in home interview, compensation is $200
Atopic Dermatitis (Eczema) caregivers of children under 2 United States
60-minute web-assisted phone interview, compensation is $120
Atrial Fibrillation (AFIB) patients United States
20-minute online survey, compensation is $40
Atrial Fibrillation (AFIB) non-causcasian patients United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer (BC) female patients United States
30-minute online survey, compensation is $60
Breast Cancer female patients ages 18-50 who have had cosmetic breast augmentation surgery United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer (BC): Metastatic patients (Stage IV) United States
25-minute survey, compensation is $50
Breast Cancer patients United States
5-minute online survey, compensation is access to a medical record collection service
Cancer patients United States
30-minute survey, compensation is $60
Cancer (excluding Breast Cancer) non-caucasian male patients United States
20-minute online survey, compensation is $40
Chronic Lung Allograft Dysfunction (CLAD) patients United States
Chronic obstructive pulmonary disease (COPD): Stage 3/Stage 4 patients in the Louisville/Denver, CO area United States
3 1/2 hour in-person usability study, compensation is $300
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Cluster Headache: Episodic, Migraine: Chronic caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Congenital Hearing Loss patients ages 18-22 and caregivers (age 18+) of patients under age 22 United States
60-minute web-assisted phone interview, compensation is $120
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Crohn's Disease (CD), Ulcerative Colitis (UC) caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Depression (MDD): Postpartum patients United States
15-minute survey, compensation is $30
Dermatomyositis (DM), Eczema (Atopic Dermatitis), Juvenile Arthritis (JA): Juvenile Idiopathic Arthritis (JIA), Lupus: Lupus Nephritis (LN), Lupus: Systemic Lupus Erythematosus (SLE), Psoriasis (PsO), Raynaud’s Syndrome, Scleroderma caregivers of adolescent patients ages 12-17 United States
Diabetes (DM): Type 1, Diabetes (DM): Type 2, Obesity, Weight Management caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Eczema (Atopic Dermatitis), Prurigo Nodularis (PN) adult patients ages 18+ United States
120-minute online bulletin board, compensation is $240
Esophageal Cancer, Head and Neck Cancer patients United States
30-minute online interview, compensation is $60
Familial Chylomicronemia Syndrome (FCS), Pancreatitis patients United States
90-minute interview + pre-work assignment + confirmation of diagnosis, compensation is $225 total
Friedreich's Ataxia (FA) caregivers United States
20-minute interview, compensation is $40
Growth Hormone Disorder (GHD) patients and caregivers in Chicago (IL), Columbus (OH), New York City (NY), Orlando (FL), Tampa (FL) United States
120-minute in-person interview, compensation is $360 for adult patients/caregivers and $385 for adolescent patients
Head & Neck Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Heart Disease: Cardiomyopathy patients United States
Heart Disease: Heart Attack (MI), Stroke patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
30-minute survey, compensation is $60
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
30-minute web-assisted phone interview, compensation is $60
Heart Disease: Non-Obstructive Hypertrophic Cardiomyopathy (nHCM), Heart Disease: Symptomatic Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
Metering app interaction, compensation up to $225
Hepatitis: Hepatitis C (Hep C) male or Non-Caucasian female patients United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour
Hidradenitis Suppurativa (HS) patients United States
60-minute web-assisted phone interview, compensation is $120
High Cholesterol (Hyperlipidemia) patients United States
60-minute web-assisted phone interview, compensation is $120
Hot Flashes and Vasomotor Symptoms (VMS) Hispanic Female patients United States
60-minute web-assisted phone interview, compensation is $120
Human Growth Hormone Deficiency (GHD) adult patients ages 18+ and caregivers of children ages 1-18 United States
120-minute online bulletin board, compensation is $240
Hypertrophic Obstructive Cardiomyopathy (oHCM) patients ages 20-29 and caregivers of patients ages 10-25 United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients United States</strong
5 minute online Survey
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients United States
Juvenile Arthritis (JA): Juvenile Idiopathic Arthritis (JIA), Juvenile Psoriatic Arthritis, Pediatric Psoriasis caregivers of children ages 2-18 United States
120-minute online bulletin board, compensation is $240
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
30-minute online survey, compensation is $60
Kidney Disease: IgA Nephropathy (Berger's Disease) patients and caregivers United States
3-minute prescreener
Kidney Disease, Kidney Disease: End Stage Renal Disease (ESRD, Kidney Failure) patients and caregivers United States
20-minute survey, compensation is $40
Kidney Disease: Polycystic Kidney Disease (PKD) patients United States
60-minute web-assisted phone interview plus a 45-minute week-long diary, compensation is $120 for the interview and $90 for the follow up diary
Leukemia: Chronic Lymphocytic Leukemia (CLL) and Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patients United States
10-minute online survey, compensation is $25
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview + 20-minute homework assignment, compensation is $120 for the interview and $40 for the homework assignment
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
Year long advisory board, compensation is $120/hour
Lung Cancer: Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview + 60-minute homework assignment, compensation is $175 for the interview and $175 for the homework assignment
Melanoma patients and caregivers United States
30-minute online interview, compensation is $60
Multifocal Motor Neuropathy(MMN) patients United States
30-minute Zoom interview, compensation is $60
Multifocal Motor Neuropathy (MMN) patients and caregivers United States
60-minute Zoom interview, compensation is $120
Multiple Myeloma (MM) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients United States
60-minute web-assisted phone interview, compensation is $120
Mycobacterium Avium Complex (MAC), Non-Cystic Fibrosis Bronchiectasis (NCFB), Nontuberculous Mycobacterial (NTM) patients United States
Myelodysplastic Syndrome (MDS) patients and caregivers United States
90-minute web-assisted phone interview (patient) and 60-minute web-assisted phone interview (caregiver) + confirmation of diagnosis, compensation is $175 (patient/90-minute interview) and $125 (caregiver/60-minute interview) and $75 for confirmation of diagnosis
Narcolepsy Type 2 male patients United States
120-minute web-assisted phone interview, compensation is $120
Neuralgia: Post Herpatic Neuralgia (PHN) patients United States
10-minute survey + 20-minute voice response, compensation is $60
Neuroendocrine Cancer (NET) (Carcinoid Cancer) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients taking/prescribed Brinsupri United States
Online surveys (6-month span), compensation provided for each survey completed
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patient United States
60-minute online interview, compensation is $120
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $125
Pancreatic Cancer caregivers United States
60-minute web-assisted phone interview, compensation is $100
Paraganglioma, Pheochromocytoma (PCC) Patient Advocacy Groups United States
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
Willing to record a doctor visit via an app, compensation is $120
Phenylketonuria (PKU) patients United States
60-minute web-assisted phone interview, compensation is $120
Phenylketonuria (PKU) patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Philadelphia Chromosome–Positive Chronic Myeloid Leukemia (Ph+ CML) patients United States
60-minute web-assisted phone interview, compensation is $120
Postural Orthostatic Tachycardia Syndrome (POTS) patients and caregivers United States
60-minute web-assisted phone interview + 40-minute survey, compensation is $200
Primary Immune Thrombocytopenia (ITP) patients not taking Rituximab (Rituxan) United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $180
Prostate Cancer: mCRPC patients United States
30-minute online survey, compensation is $60
Prurigo Nodularis (PN) patients United States
60-minute web-assisted phone interview, compensation is $120
Psoriasis (PSO), Psoriatic Arthritis (PsA) African American, Asian, Hispanic patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Pulmonary Arterial Hypertension (PAH) patients diagnosed within the last year United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients who currently use the RemunityPRO Pump United States
30-minute web-assisted phone interview, compensation is $50
Rheumatoid Arthritis (RA) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Schizophrenia patients who use Cobenfy United States
20-minute survey, compensation is $40
Scleroderma: Systemic Scleroderma patients United States
60-minute online bulletin board plus a 60-minute web-assisted follow up phone interview, compensation is $120 for the online bulletin board and $120 for the follow up interview
Sinusitis: Rhinosinusitis patients United States
60-minute web-assisted phone interview, compensation is $120
Sjogren's Syndrome (SjS, SS) patients ages 40-60, males any race/ethnicity and non-caucasian females United States
60-minute web-assisted phone interview, compensation is $120
Tardive Dyskinesia (TD) patients United States
45-minute online survey, compensation is $90
Tumors Associated With Hypoglycemia (Hyperinsulinism) patients and caregivers United States
Ulcerative Colitis (UC) patients United States
30-minute online survey, compensation is $50
Urticaria (Hives): Chronic Spontaneous caregivers of children ages 18 and under United States
60-minute web-assisted phone interview, compensation is $120
Urticaria (Hives): Chronic Spontaneous patients ages 18 and over and caregivers of patients ages 12 and older United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
VEXAS Syndrome patients United States
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Canada
Breast Cancer (BC), Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Multiple Myeloma (MM), Prostate Cancer, Solid Tumor patients Canada
15-minute online survey, compensation is 26 CAD
Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers Canada
60-minute web-assisted phone interview + a 30-minute homework assignment, compensation is $180
United Kingdom
Familial Chylomicronemia Syndrome (FCS), Pancreatitis patients United Kingdom
90-minute interview + pre-work assignment + confirmation of diagnosis, compensation is 140 GBP total
High Triglycerides (Hypertriglyceridemia) patients United Kingdom
45-minute web-assisted phone interview, compensation is 40 GBP
France
Achondroplasia caregivers France
60-minute web-assisted phone interview, compensation is $120 USD
Germany
Achondroplasia caregivers Germany
60-minute web-assisted phone interview, compensation is $120 USD
High Triglycerides (Hypertriglyceridemia) patients Germany
45-minute web-assisted phone interview, compensation is 55 Euros
Italy
High Triglycerides (Hypertriglyceridemia) patients Italy
45-minute web-assisted phone interview, compensation is 55 Euros
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 $18 million dollars since 2013 for participating in research studies.
