Patients and Caregivers Needed

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by Chris Durst       July 17, 2025

Many of us have, or care for people who have, a disease or condition, and sometimes you may feel that your voice isn’t being heard. Here’s your chance to speak up AND earn at the same time!

If you’ve been following Rat Race Rebellion for a while, you’ve probably seen our posts about Rare Patient Voice.

Through studies, Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.

They also offer a a unique opportunity for patients and caregivers to earn extra income by participating in health-related research studies.
Overview of Study Methods

Participants can engage in various study formats, including:

Telephone Interview/Tele-depth Interview (TDI): Share opinions and attitudes over the phone.

Web-assisted Telephone Interview (WATI): Use platforms like Zoom, Skype, or Teams to provide feedback.

In-person Interview (IDI): Offer insights face-to-face.

Ethnography (ETHNO): Researchers learn about participants in their own environment.

Focus Groups: Small group discussions led by a moderator, either in-person or remotely.

Journaling/Homework: Daily entries on activities and how medical conditions affect participants.

Online Bulletin Boards/Communities: Provide input on specific topics over days or weeks.

Usability/UX Research: Interactions with products or devices are studied to improve design.

In-home Use Test (IHUT): Test products at home and report back.

Voice Response: Interact with a computer-operated phone system.

Current Study Opportunities – UNITED STATES

Achondroplasia Adolescents (Ages 16-17) and Parents of Children (Ages 0-17): 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

Acromegaly patients: 90-minute web-assisted phone interview plus a 15-minute pre-read assignment, compensation is $180 for the interview and $30 for the pre-read assignment

Alopecia Areata (AA) patients : 90-minute web-assisted phone interview, compensation is $150

Alzheimer’s Disease (AD) patients over age 65 and caregivers ages 25-64: 30-minute web-assisted phone interview, compensation is $60

Alzheimer’s Disease (AD), Heart Disease patients Indianapolis, IN: 1 day in-person event , compensation is $125 per hour

Amyloidosis: ATTR-CM or ATTR-PN patients: 60-minute web-assisted phone interview, compensation is $120

Amyloidosis: ATTR-CM patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Atopic Dermatitis (Eczema) patients: 60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120

Atopic Dermatitis (Eczema) patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Bladder Cancer patients: 20-minute online survey, compensation is $40

Bladder Cancer patients: 60-minute web-assisted phone interview, compensation is $120

Bladder Cancer patients and caregivers: 30-minute online survey, compensation is $60

Breast Cancer (BC): Metastatic patients: 60-minute web-assisted phone interview, compensation is $120

Breast Cancer (BC) patients: 30-minute web-assisted phone interview, compensation is $60

Breast Cancer (BC) patients: 30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Breast Cancer (BC) patients ages 18-65 diagnosed within the last few years: 15 minute online survey, compensation is $40

Bladder Cancer patients and caregivers: 60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $150

Cardiovascular Disease, High Blood Pressure (Hypertension, HBP), Hispanic or Latino/Latina patients fluent in Spanish: 75-minute web-assisted phone interview, compensation is $150

Cervical Cancer, Endometrial Cancer, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Stomach (Gastric) Cancer patients: 45-minute web-assisted phone interview, compensation is $150

Chronic Idiopathic Urticaria (CIU), Chronic Spontaneous Urticaria (CSU) patients: 60-minute web-assisted phone interview with potential for follow-up video opportunities,c compensation is $120

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients: medical record service sign up, compensation is $75 for the initial signup

Chronic Obstructive Pulmonary Disease (COPD) patients: 60-minute web-assisted phone interview, compensation is $120

Colorectal (Colon) Cancer patients: 30-minute online survey, compensation is $60

Congenital Adrenal Hyperplasia (CAH) patients: This is a 5-minute survey for a medical history platform, compensation is a $25 gift card

Crohn’s Disease (CD), Microscopic Colitis, Ulcerative Colitis (UC) patients: 90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $210

Cushing’s Syndrome (Hypercortisolism) patients and caregivers: 60-minute web-cam interview with an optional 30-40 minute prework assignment, compensation is $120 for the interview and $75 for the prework assignment

Cutaneous Lichen Planus patients: 60-minute web-assisted phone interview, compensation is $167

Cutaneous Lupus Erythematosus (CLE) patients: 70-min Virtual Ethnography via Recollective + 60-min Follow Up Interview via Zoom, Compensation is $140 for the Virtual Ethnography and $120 for the follow-up interview

Dementia caregivers: 90-minute web-assisted phone interview plus a 60-minute follow-up web-assisted phone interview (confirmation of diagnosis required), compensation is $160 for the initial interview + $110 for the follow-up interview + $50 for confirmation of diagnosis

Desmoid Tumor male patients: 60-minute web-assisted phone interview, compensation is $100

Diabetes (DM): Type 2, Obesity Hispanic or Latino/Latina patients fluent in Spanish: 75-minute web-assisted phone interview, compensation is $150

Dwarfism: Achondroplasia caregivers: 30-minute online survey, compensation is $60

Endometrial Cancer patients: 90-minute web-assisted phone interview, compensation is $200

Eosinophilic Esophagitis (EOE) patients: 60-minute web-assisted phone interview, compensation is $120

Epilepsy: Focal Seizures (Partial Seizures) patients and caregivers of pediatric patients (ages 1-17) who have taken Briviact: 30-minute online survey, compensation is $60

Heart Disease, High Cholesterol (Hyperlipidemia) Asian, Native Hawaiian, Pacific Islander, African American, Hispanic/Latino patients: 90-minute focus group, compensation is a $150 electronic Amazon gift card

Heart Disease: Pericarditis patients: 30-minute online survey, compensation is $105

Heart Disease: Heart Attack (MI), Stroke patients: 30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Hemophilia A patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Hemophilia A patients and caregivers: 60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $30 for the homework assignment

Hemophilia B caregivers of patients born in 2007 or later: 60-minute web-assisted phone interview, compensation is $120

Hepatitis: Hepatitis B (Hep B) patients: 45-minute web-assisted phone interview, compensation is $90

Hepatitis: Hepatitis C (Hep C) Non-Caucasian male or female patients ages 18-55: Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour

Hepatitis: Hepatitis C (Hep C) patients: 20-minute online survey, compensation is $40

HER2 Positive Cancer patients: 60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Human Growth Hormone Deficiency (GHD), Muscle-Wasting Disease, Short Bowel Syndrome (SBS, Short Gut) patients in Chicago and Schaumburg, IL: 60-minute in-person interview, compensation is $150

Huntington’s Disease (HD) patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Hypophosphatasia (HPP), Rickets (Osteomalacia), X-Linked Hypophosphatemia (XLH) patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Immune Thrombocytopenic Purpura (ITP) patients: 60-minute web-assisted phone interview, compensation is $120

Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients currently using Tyvaso DPI and caregivers: 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: Complement-3 Glomerulopathy (C3G) patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Kidney Disease: IgA Nephropathy (Berger’s Disease) patients: 60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $30 for the homework assignment

Kidney Disease: IgA Nephropathy (Berger’s Disease) patients: 90-minute web-assisted phone interview, compensation is $150

Kidney Disease: IgA Nephropathy (Berger’s Disease) patients ages 18-64 in California, Connecticut, Florida, Illinois, Indiana, New Jersey, New York, Texas, Wisconsin: 60-minute web-assisted phone interview, compensation is $250

Leukemia: Chronic Lymphocytic Leukemia (CLL) patients: 60-minute web-assisted phone interview, compensation is $100

Liver Disease (not hepatitis): Biliary Atresia (BA) patients and caregivers: 60-minute web-assisted phone interview, compensation is $100

Liver Disease (not hepatitis): NASH/MASH Hispanic or Latino/Latina patients fluent in Spanish: 75-minute web-assisted phone interview, compensation is $150

Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients: 20-minute online survey, compensation is $40

Lupus: Lupus Nephritis (LN) non-caucasian, non-hispanic female patients: 30-minute online survey, compensation is $60

Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients: 30-minute online survey, compensation is $60

Macular Degeneration: Geographic Atrophy patients ages 50+ and caregivers: 60-minute web-assisted phone interview, compensation is $120

Multiple Myeloma (MM) patients: 20-minute online survey, compensation is $40

Multiple Myeloma (MM) patients: 30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview

Multiple Myeloma (MM) patients and caregivers: 30-minute online survey, compensation is $60

Multiple Myeloma (MM) patients and caregivers: 15-minute online survey, compensation is $30

Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont: 20-minute online survey, compensation is $40

Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS), Multiple Sclerosis (MS): Secondary Progressive MS (SPMS) caregivers: 25-minute online survey, compensation is $50

Multiple System Atrophy (MSA) patients and caregivers: 60-minute web-assisted phone interview and 40-minute pre-work assignment, compensation is $200

Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) caregivers: 60-minute web-assited phone interview, compensation is $120

Myasthenia Gravis (MG), Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) caregivers of pediatric patients: 60-minute web-assisted phone interview, compensation is $120

Myasthenia Gravis (MG) patients and caregivers in Denver, CO; Tampa, FL; Orlando, FL; Chicago, IL; Charlotte, NC; Raleigh, NC; Manhattan, NY; Cincinnati, OH; Columbus, OH: 60-minute in-person interview, compensation is $180

Myelofibrosis (MF) patients: 25-minute online survey, compensation is$50

Neuroendocrine Cancer (NET): Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Non-Clear Cell Renal Cell Carcinoma (Kidney Cancer, RCC) patients: 60-minute web-assisted phone interview, compensation is $120

Non-Hodgkin’s Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL), Leukemia: Chronic Lymphocytic Leukemia (CLL) patients: 30-minute online survey, compensation is $60

Osteoporosis Hispanic patients ages 55 and older: Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour

Paroxysmal Nocturnal Hemoglobinuria (PNH) patients: 40-minute online survey, compensation is $150

Pediatric Low-Grade Glioma (pLGG) caregivers of recently diagnosed patients ages 1-17: 60-minute web-assisted phone interview, compensation is $120

Phenylketonuria (PKU) disengaged patients not currently taking pharmaceutical treatments or who have not seen a metabolic specialist or healthcare provider in the past year: 60-minute online survey, compensation is $120

Platinum Resistant Ovarian Cancer patients: 60-minute web-assisted phone interview, compensation is $120

Primary Immunodeficiency: Activated PI3K-Delta Syndrome (APDS) patients: 60-minute web-assisted phone interview, compensation is $125

Prostate Cancer patients : 30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview

Prostate Cancer patients ages 45+: 15-minute online survey, compensation is $30

Psoriasis: Generalized Pustular Psoriasis (GPP) patients: Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations

Psoriasis (PsO), Psoriatic Arthritis (PsA) patients: 30-minute online survey, compensation is $60

Psoriasis (PsO), Psoriatic Arthritis (PsA) patients: 60-minute web-assisted phone interview, compensation is $120

Psoriasis (PSO), Psoriatic Arthritis (PsA) non-caucasian patients: 30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview

Psoriatic Arthritis (PsA) patients: 60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120

Rheumatoid Arthritis (RA) patients: 30-minute online survey, compensation is $50

Rheumatoid Arthritis (RA) patients: 30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview

Schizophrenia patients: 30-minute online survey plus a 60-minute follow-up interview, compensation is $60 for the survey and $120 for the follow-up interview

Schizophrenia patients: 30-minute online survey, compensation is $60

Scleroderma: Diffuse Systemic Scleroderma, Scleroderma: Limited, Scleroderma: Systemic Scleroderma patients: 60-minute web-assisted phone interview, compensation is $125

Scleroderma, Systemic Sclerosis (SSc) patients: 45-minute web-assisted phone interview, compensation is $100

Sickle Cell Disease (SCD) caregivers: 30-minute online survey, compensation is $60

Sjogren’s Syndrome (SjS, SS) male patients: 60-minute web-assisted phone interview, compensation is $120

Spinal Muscular Atrophy (SMA) patients: 75-minute survey plus a follow-up survey, compensation is $125 for the initial survey and $25 for the follow-up survey

Stomach (Gastric) Cancer patients and caregivers: 30-minute pre-work assignment plus a 60-minute web-assisted phone interview, compensation is $60 for the pre-work assignment and $120 for the interview

Thyroid Eye Disease (TED) female patients: 30-minute online survey, compensation is $60

Ulcerative Colitis patients: 30-minute online survey, compensation is $50

Urticaria patients: 90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis

Vasculitis patients: 60-minute web-assisted phone interview, compensation is $120

Vision Impairment: Retinitis Pigmentosa patients and caregivers: 60-minute web-assisted phone interview, compensation is $120

Vitiligo patients: 60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $130

Vitiligo patients ages 18-71: 20-minute online survey, compensation is $40

HOW TO APPLY

(Friendly reminder, Rat Race Rebellion doesn’t play a role in the applications or hiring processes for jobs we’ve posted to our site. We’re a job board and blog.)

CLICK HERE to visit the Rare Patient Voice site and see all listings. For more jobs like this, check our Newest Jobs & Gigs page. To be the first to hear about jobs like these, join our free Telegram channel. Good luck as you make your work from home plans a reality!