What's New at Rare Patient Voice?
Study Results
A new Rare Patient Voice study on the mental health burden of rare disease recently found that rare disease patients and family caregivers share a very similar emotional burden. This research, conducted in late 2025, surveyed 958 both patients and family caregivers in the United States from the rare disease community. Respondents provided insights into their emotional distress levels, types of challenges faced, support systems utilized, and unmet needs.
One of the surprising takeaways was that rare caregivers experience nearly identical emotional distress levels as patients:
- Patients: 44.2% report high emotional distress; mean score 3.39
- Caregivers: 38.3% report high emotional distress; mean score 3.28
This finding reveals that caregivers are living close to the same emotional reality as patients, carrying comparable levels of anxiety, stress, and emotional burden. This is further proof that supporting caregivers is essential to maintaining the entire care system.
Your Time Is Valued, Even If You Didn’t Qualify
We value your time, whether you qualify for a study or not. Each month we automatically enter people 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, Margaret!
Partner Corner
Legacy Cares’ mission is to provide affordable and quality mental health care, substance abuse treatment, housing services, and education to people who are impacted by HIV/AIDS. Website: www.legacycares.org
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
Achondroplasia caregivers of children ages 4-17 United States
45-minute online survey, compensation is $100
Achondroplasia caregivers of patients ages 1-17 United States
3-hour in-person photo shoot, compensation is $500
Achondroplasia caregivers of children ages 1-17 United States
3 day online journal + 60-minute web-assisted interview, compensation is $360 for the online journal and $120 for the interview
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Alpha 1 Antitrypsin Deficiency (A1AD) patients and caregivers United States
60-minute online interview, compensation is $120
Amyloidosis: ATTR-CM 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
Ataxia: Ataxia Telangiectasia caregivers of children ages 6-11 United States
60-minute Zoom interview, compensation is $150
Atopic Dermatitis (Eczema) caregivers of children under 2 United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) patients and caregivers of patients ages 12+ United States
60-minute web-assisted phone interview, compensation is $120
Atrial Fibrillation (AFIB) non-causcasian patients United States
60-minute web-assisted phone interview, compensation is $120
Bipolar 1 or Schizophrenia patients who currently or have used an injectable treatment United States
60-minute web-assisted phone interview plus a 20-minute homework assignment, compensation is $150 for the interview and $50 for the homework assignment
Bladder Cancer: Muscle-Invasive Bladder Cancer (MIBC) patients United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $100 for the interview and $80 for confirmation of diagnosis (paid via egift card)
Bladder Cancer patients United States
Year long online community, compensation is gift cards upon completion of sections
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 10-minute pre-work assignment, compensation is $145
Bone Marrow Transplant (BMT) (Stem Cell Transplant) Hispanic/Latino patients and caregivers United States
Breast Cancer (BC): Metastatic patients (Stage IV) United States
25-minute survey, compensation is $50
Breast Cancer (BC) patients United States
30-35 minute online survey, compensation is $60
Breast Cancer patients United States
5-minute online survey, compensation is access to a medical record collection service
Breast Cancer (BC) 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
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
Cancer patients who are male and have been diagnosed within the last 2 years in New Jersey or New York United States
60-minute web-assisted phone interview, compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) male patients United States
Medical record service sign up, compensation is $75 for the initial signup
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
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
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
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Depression male patients ages 21-65 available to travel (within the US) United States
60-minute web-assisted phone interview, compensation is $120
Eczema (Atopic Dermatitis) patients United States
60-minute web-assisted phone interview + 15-minute pre-work assignment, compensation is $150 for the interview and $25 for the pre-work assignment
Eczema (Atopic Dermatitis), Prurigo Nodularis (PN) adult patients ages 18+ United States
120-minute online bulletin board, compensation is $240
Endometrial Cancer, Liver Cancer, Renal Cell Carcinoma (Kidney Cancer, RCC), Thyroid Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Eosinophilic Esophagitis (EOE) patients United States
60-minute web-assisted phone interview, compensation is $120
Esophageal Cancer, Head and Neck Cancer patients United States
30-minute online interview, compensation is $60
Essential Thrombocythemia patients United States
10-minute online survey + 20 minute interview, compensation is a $60 gift card
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
10-15 minute survey, compensation is $55
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
Hepatitis: Hepatitis B (Hep B), Hepatitis: Hepatitis C (Hep C), Liver Disease (not hepatitis): Alcohol-Related Liver Disease (ARLD), Liver Disease (not hepatitis): NASH/MASH patients United States
35-minute online diary + two follow up 45-minute web-assisted phone interview, compensation is $70 for the online diary and $90 for each follow up interview
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
HER2 Positive Cancer patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Hereditary Hemorrhagic Telangiectasia (HHT) patients and caregivers United States
75-minute online survey + a 20-minute homework assignment, compensation is $200
Hidradenitis Suppurativa (HS) 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
Hypoparathyroidism patients United States
60-minute web-assisted phone interview, compensation is $150
IgA Nephropathy (Berger's Disease) patients United States</strong
5 minute online Survey
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, Kidney Disease: End Stage Renal Disease (ESRD, Kidney Failure) patients and caregivers United States
20-minute survey, compensation is $40
Kidney Disease patients (Stage V on Dialysis) and caregivers United States
20-minute online 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, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
30-minute online survey, compensation is $90
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
Year long advisory board, compensation is $120/hour
Lupus: Systemic Lupus Erythematosus (SLE) male patients ages 45+ United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $150
Lymphoma: Small Lymphocytic Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Macular Degeneration: Geographic Atrophy patients ages 50+ and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Melanoma patients and caregivers United States
30-minute online interview, compensation is $60
Migraine patients United States
60-minute web-assisted phone interview, compensation is $120
Muscular Dystrophy (MD): Becker Muscular Dystrophy (BMD) patients ages 18+ and caregivers of patients ages 9-17 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
30-minute online survey, compensation is $60
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
Myopathy patients United States
15-minute online survey, compensation is $30
Myositis patients United States
60-minute web-assisted phone interview, compensation is $120
Neuroendocrine Cancer (NET) (Carcinoid Cancer) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Niemann-Pick Disease patients and caregivers United States
In-person interviews
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): Diffuse Large B Cell Lymphoma (DLBCL) patients on CART Therapy and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Organ Transplant: Kidney patients United States
60-minute online interview, compensation is $100
Ovarian Cancer patients and caregivers United States
60-minute pre-interview + 60-minute web-assisted phone interview, compensation is $120 per interview
Overactive Bladder (OAB) patients who have a nerve implant United States
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
Willing to record a doctor visit via an app, 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
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations
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 who are taking Treprostinil United States
45-minute web-assisted phone interview, compensation is $90
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
Scleroderma, Systemic Sclerosis (SSc) patients United States
45-minute web-assisted phone interview, compensation is $100
Sickle Cell Disease (SCD) patients ages 18-30 United States
15-minute online survey, compensation is a $25 Amazon gift card
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
Spinal Muscular Atrophy (SMA) patients ages 18-25 and caregivers of patients ages 2-17 United States
40-minute online survey, compensation is $80
Tardive Dyskinesia (TD) patients United States
45-minute online survey, compensation is $90
Thyroid Eye Disease (TED) patients United States
30-minute online survey, compensation is $70
Ulcerative Colitis (UC) patients United States
30-minute online survey, compensation is $50
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
Vision Impairment, Loss of Mobility patients who have a pet and are in Chicago IL United States
120-minute in-person interview, compensation is $275
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Canada
Alpha 1 Antitrypsin Deficiency (A1AD) patients and caregivers Canada
60-minute online interview, compensation is 165 CAD
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
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP
Germany
Alpha 1 Antitrypsin Deficiency (A1AD) patients and caregivers Germany
60-minute online interview, compensation is 105 EURO
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.
