What's New at Rare Patient Voice?
Study Results
Rare disease can take a toll on the mental health of the person living with the disease, as well as his/her family caregiver. In September 2025, RPV conducted a survey of 958 rare disease patients and caregivers for their insights on the mental health burden of rare disease. The findings will be shared in a December webinar, but here are some interesting takeaways on emotional well being overall:
- Distress is the norm, not the exception — most people experience it frequently.
- Caregivers mirror patients emotionally — they’re living the same emotional reality.
- There’s no meaningful gap between the two groups’ distress levels.
Your Time Is Valued, Even If You Didn’t Qualify
We always appreciate your time 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 drawing for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Cory!
Partner Corner
Tembo Health is your personal virtual support team for unlimited dementia care. Receive free advice from expert dementia care navigators, such as how to prevent falls, how to find local resources and how to receive financial support. It's 100% free for people with Medicare. In cases of moderate and severe dementia, we can assist patients in accessing $2500/year in deferring care costs. Website: https://www.tembo.health/
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 pediatric patients United States
60-minute web-assisted phone interview via webcam, compensation is $120
Acute Coronary Syndrome (ACS), Atrial Fibrillation (AFIB) patients United States
60-minute web-assisted phone interview, compensation is $120
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 Thalassemia, Beta Thalassemia patients and caregivers United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $50 for confirmation of diagnosis
Alpha-1 Antitrypsin (A1AT) Deficiency patients United States
60-minute online interview, compensation is $120
Alzheimer’s Disease (AD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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
Autoimmune Encephalitis (AE) patients and caregivers United States
Patients: 60-minute web-assisted phone interview or 60-minute autoethnography; caregivers: 30-minute web-assisted phone interview; patient/caregiver duo: 30-minute web-assisted phone interview, compensation is $150 for the patient interview or autoethnography, $75 for the caregiver interview, $75/patient and $75/caregiver for the duo interview
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
Brain Tumor patients ages 18-65 and caregivers of patients under age 17 or older than age 65 United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer (BC), Colorectal Cancer, Kidney/Renal Cancer, Lung Cancer, Skin Cancer: Melanoma caregivers United States
20-minute online survey, compensation is $40
Breast Cancer (BC): Metastatic, Breast Cancer (BC): Triple-negative breast cancer (TNBC) Stage IV patients diagnosed within the last 18 months 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
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
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States
Chronic Idiopathic Urticaria (CIU), Chronic Spontaneous Urticaria (CSU) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities,c compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
medical record service sign up, compensation is $75 for the initial signup
Chronic Kidney Disease (CKD) patients United States
30-minute survey, compensation is $60
Chronic obstructive pulmonary disease (COPD) and Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients United States
75-minute interview plus a 25-minute pre-work assignment, compensation is $112 for the interview and $30 for the pre-work assignment
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Classic Congenital Adrenal Hyperplasia (CAH) patients and caregivers United States, 30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
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), Ulcerative Colitis (UC) patients and caregivers in Chadds Ford, PA United States
90-minute in-person interview, compensation is $200 for patients and $225 for caregivers
Crohn’s Disease (CD) OR Ulcerative Colitis (UC) Caregivers of patients ages 2-17 United States
60-minute online bulletin board, compensation is $120
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Dry Age-Related Macular Degeneration (Dry AMD) patients ages 60+ United States
20-minute online survey, compensation is $40
Eosinophilic Esophagitis (EOE) patients United States
60-minute web-assisted phone interview, compensation is $120
Familial Hypercholesterolemia, Heart Disease, High BMI, High Cholesterol caregivers of adolescent patients ages 10-17 United States
75-minute in person interview, compensation is $215
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 patients United States
20-minute survey, compensation is $40
Hemochromatosis (Iron Overload) patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $230
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 Angioedema (HAE) Type 1 & Type 2 patients Clinical Trial United States
Hypoparathyroidism caregivers of patients ages 12-17 United States
60-75 minute web-assisted phone interview, compensation is $150
IgA Nephropathy (Berger's Disease) patients United States</strong
5 minute online Survey
Interstitial Lung Disease (ILD) patients United States
30-minute online survey, compensation is $50
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF) caregivers of male patients currently using Tyvaso DPI United States
30-minute interview with the possibility of a 1 - 3.5 hour video creation opportunity, compensation is $50 for the initial interview and $100/hour for the video opportunity
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
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: Acute Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $150
Leukemia: Acute Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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 United States
60-minute web-assisted phone interview, compensation is $100
Liver Disease: Primary Sclerosing Cholangitis (PSC) patients and caregivers United States
25-minute online survey, compensation is $50
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) male 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 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
Lupus: Subacute Cutaneous Lupus Erythematosus (CLE) patients and caregivers United States
20-minute online survey, compensation is $40
Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Macular Degeneration: Wet Macular Degeneration, Vision Impairment: Diabetic Macular Edema (DME) 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
Menopause Hispanic patients United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma (MM) Non-Caucasian patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Muscular Dystrophy (MD): Facioscapulohumeral Muscular Dystrophy (FSH), Spinal Muscular Atrophy (SMA) patients and caregivers United States
60-minute in person interview, compensation is $180
Myasthenia Gravis (MG) patients United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients in Orlando, FL United States
75-minute in-person interview, compensation is $225
Myelodysplastic Syndrome (MDS) patients and caregivers United States
90-minute web-assisted phone interview (patient) and 60-minute web-assisted phone interview (caregiver), compensation is $120 (patient/90-minute interview) and $80 (caregiver/60-minute interview)
Neuroendocrine Cancer (NET) patients and caregivers United States
40-minute web-assisted phone interview + 20-minute web-assisted phone interview, compensation is $80 for the 40-minute interview and $40 for the 20-minute interview
Neurofibromatosis Type 1 (NF1) patients and caregivers United States
30-minute online survey, compensation is $60
Niemann-Pick Disease patients who are Patient Advocacy Group Leaders United States
45-minute web-assisted phone interview, compensation is $180
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients taking/prescribed Brinsupri United States
Online surveys (6-month span), compensation provided for each survey completed
Non Hodgkin Lymphoma: Diffuse Large B Cell Lymphoma (DLBCL) and Follicular Lymphoma patients United States
60-minute web-assisted phone 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
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Noonan Syndrome (NS) caregivers of patients ages 3-14 and patients ages 8-14 (with caregiver's consent to participate) United States
90-minute web-assisted phone interview (caregivers) or 75-minute web-assisted phone interview (patient), compensation is $150
Ovarian Cancer patients United States
25-minute survey, compensation is $50
Ovarian Cancer patients United States
60-minute web-assisted phone interview plus 30-minute online pre-task assignment, compensation is $120 for the interview and $80 for the pre-task assignment
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
Philadelphia Chromosome–Positive Chronic Myeloid Leukemia (Ph+ CML) patients United States
60-minute web-assisted phone interview, compensation is $120
PreP, HIV patients United States
Prostate Cancer patients United States
10-minute online survey, compensation is $25
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
Psoriatic Arthritis (PsA) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients United States
30-minute survey, compensation is $60
Pulmonary Arterial Hypertension (PAH) patients United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Fibrosis (PF): Idiopathic Pulmonary Fibrosis (IPF) or Progressive Pulmonary Fibrosis (PPF) patients United States
30-minute online survey, compensation is $60
Rheumatoid Arthritis (RA) patients United States
30-minute online survey, 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) male patients United States
60-minute web-assisted phone interview, compensation is $120
Thyroid Eye Disease (TED) patients United States
30-minute online survey, compensation is $70
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
X-Linked Hypophosphatemia (XLH) patients United States
60-minute web-assisted phone interview, compensation is $120
X-Linked Hypophosphatemia (XLH) patients and caregivers United States
60-minute zoom interview, compensation is $110
X-Linked Retinoschisis (XLRS) adult patients and caregivers of children ages 1-17 United States
75-minute Zoom Interview (laptop/desktop with camera required), compensation is $150
United Kingdom
Asthma, Nasal Polyps patients United Kingdom
120-minute online bulletin board plus a 2-hour follow-up focus group
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP
Hypoparathyroidism caregivers of patients ages 12-17 United Kingdom60-75 minute web-assisted phone interview, compensation is $110 GBP
France
Asthma, Nasal Polyps patients France
120-minute online bulletin board plus a 2-hour follow-up focus group
Germany
Achondroplasia caregivers of pediatric patients Germany
60-minute web-assisted phone interview via webcam, compensation is $120 USD
Asthma, Nasal Polyps patients Germany
120-minute online bulletin board plus a 2-hour follow-up focus group
Italy
Achondroplasia caregivers of pediatric patients Italy
60-minute web-assisted phone interview via webcam, compensation is $120 USD
Asthma, Nasal Polyps patients Italy
120-minute online bulletin board plus a 2-hour follow-up focus group
Spain
Asthma, Nasal Polyps patients Spain
120-minute online bulletin board plus a 2-hour follow-up focus group
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 $15 million dollars since 2013 for participating in research studies.
