Work From Home: Share Your Voice, Help Shape Better Patient Care: Opportunities with Rare Patient Voice

by Rat Race Rebellion Dec. 6, 2025

Please note that this is an opportunity for those who have an OFFICIAL DIAGNOSIS and is not open to those who are SELF-DIAGNOSED. Disclosure: The following is a promotional post for Rare Patient Voice. RPV is one of our affiliate advertisers. The links in this post will pay us a small fee if you use them. Thank you!

For many people living with medical conditions—or caring for someone who does—the chance to share their experiences can be meaningful.

Researchers developing new products, treatments, and services need real-world input to ensure what they create genuinely addresses patient needs. Rare Patient Voice helps make that possible by connecting patients and caregivers with reputable research studies.

At Rat Race Rebellion, we only highlight opportunities that we’ve taken the time to carefully review. Rare Patient Voice (RPV) is one of those organizations. We’ve vetted them, confirmed their legitimacy, and spoken directly with their team. While we earn a small affiliate commission when readers sign up through our link, we would not share this opportunity if it didn’t provide real value to patients and caregivers.

How Rare Patient Voice Works

When you join Rare Patient Voice, you may receive invitations to participate in interviews, surveys, diaries, online bulletin boards, or advisory boards. You decide which opportunities you want to take part in—there is never an obligation to accept.

A few important points:

Most studies pay approximately $120 per hour, with some paying more or offering gift cards.
If you earn over $600 in a calendar year, RPV will collect your Social Security number as required for IRS reporting (Form 1099).
You may hear from RPV frequently, or only occasionally—opportunities depend on the conditions researchers are focusing on at any given time.
Since 2013, RPV has paid patients and caregivers over $15 million for participating in studies.

Sharing your experiences can help pave the way for better, more patient-centered care. If you’re not a member yet, you can sign up and list all relevant medical conditions to be matched with potential opportunities.

You can also share the link with friends or family who may qualify.

Current Studies Seeking Participants

Below is the full list of available studies provided by Rare Patient Voice, including eligibility criteria and compensation. Availability can change quickly, and completing the sign-up form is the best way to ensure you’re notified of future opportunities as well.

United States Studies

Achondroplasia

Adolescents (16–17) & parents of children (0–17): 5-minute survey; caregivers may earn up to $90/year for brief surveys.
Caregivers of patients (1–17): 3-hour in-person photo shoot; $500.
Caregivers of children (1–17): 3-day online journal ($360) + 60-minute interview ($120) — total $480.

Acute Coronary Syndrome (ACS) / Atrial Fibrillation (AFIB)

Patients: 60-minute interview; $120.

Advanced Parkinson’s Disease

Patients: 60-minute interview; $120.

Alzheimer’s Disease

Patients & caregivers: 60-minute interview; $120.

Amyotrophic Lateral Sclerosis (ALS)

Patients & caregivers: 20-minute survey; $50.

Ataxia / Ataxia Telangiectasia

Caregivers of children (6–11): 60-minute Zoom interview; $150.

Atopic Dermatitis (Eczema)

Caregivers: 10-minute survey; $25.
Caregivers of children under 2: 60-minute interview; $120.
Patients & caregivers (12+): 60-minute interview; $120.

Atrial Fibrillation

Non-Caucasian patients: 60-minute interview; $120.

Autoimmune Encephalitis

Patients: 60-minute interview or autoethnography; $150.
Caregivers: 30-minute interview; $75.
Patient/caregiver duo: 30-minute interview; $75 each.

Bipolar 1 or Schizophrenia

Patients who use/have used injectable treatment: 60-minute interview ($150) + 20-minute homework ($50) — total $200.

Bladder Cancer

MIBC patients: 60-minute interview ($100) + confirmation ($80 gift card).
General patients: year-long online community; gift cards.

Bone Marrow Transplant

Hispanic/Latino patients & caregivers: compensation varies.

Brain or Spinal Tumor/Cancer

Patients (18–65) & caregivers (under 17 or over 65): 60-minute interview; $120.

Breast Cancer

Metastatic (Stage IV): 25-minute survey; $50.
General: 5-minute survey; medical record collection service.
General: 30–60-minute interview; $120.

Cancer (Multiple Types)

General cancer patients: 30-minute survey; $60.
Non-caucasian male cancer patients (not breast cancer): 20-minute survey; $40.
Male patients in NJ/NY diagnosed within 2 years: 60-minute interview; $120.

Chronic Immune Thrombocytopenia (ITP)

Patients: 60-minute interview; $120.

CIDP

Patients: medical record service signup; $75.

Chronic Kidney Disease (CKD)

Patients: 30-minute survey; $60.

COPD

Various studies:
- 60-minute interviews; $120.
- 40-minute survey; $80.
- 3.5-hour in-person usability study (Louisville/Denver): $300.

Colorectal Cancer

Patients: 30-minute survey; $60.

Congenital Adrenal Hyperplasia

Patients: 5-minute survey; $25 gift card.

Congenital Fibrinogen Deficiency

Patients: 60-minute interview; $120.

Crohn’s Disease

Patients: 3-year participation study; compensation varies by task.

Cutaneous Lichen Planus

Patients: 60-minute interview; $167.

Depression (Male, 21–65, able to travel in US)

60-minute interview; $120.

Eczema or Prurigo Nodularis

Adult patients (18+): 120-minute online bulletin board; $240.

Endometrial, Liver, Kidney, or Thyroid Cancer

Patients: 60-minute interview; $120.

Eosinophilic Esophagitis

Patients:
- 60-minute interview: $120.
- 45-minute diary ($100) + 75-minute interview ($150): total $250.

Epilepsy / Rett Syndrome

Caregivers (24+): 60-minute interview; $120.

Essential Thrombocythemia

Patients & caregivers: 60-minute interview; $120.

Familial Chylomicronemia Syndrome

Patients & caregivers: 10–15-minute survey; $55.

GIST

Patients: up to 8-hour bulletin board; $960 total.

Grave’s Disease / Thyroid Eye Disease

Patients: 60-minute interview; $100.

Heart Disease

Cardiomyopathy: compensation varies.
Heart attack or stroke: 30–60-minute interview; $120.
Non-obstructive HCM: 60-minute interview; $120.

Hepatitis C

Male or non-Caucasian female patients: preliminary interview; $100/hour for potential 3-year project.

HER2-Positive Cancer

Patients: 60-minute interview; $120.

Hereditary Angioedema

Clinical trial; compensation varies.

Hidradenitis Suppurativa

Patients: 60-minute interview; $120.

Human Growth Hormone Deficiency

Adults (18+) & caregivers of children (1–18): 120-minute bulletin board; $240.

Hypertrophic Obstructive Cardiomyopathy

Patients (20–29) & caregivers (10–25): 60-minute interview; $120.

IgA Nephropathy

5-minute survey; compensation varies.
60-minute interview; $120.
90-minute interview; $150.

Interstitial Lung Disease / Pulmonary Fibrosis

Caregivers of male patients using Tyvaso DPI: 30-minute interview ($50) + possible video (1–3.5 hours at $100/hr).

Juvenile Arthritis / Pediatric Psoriasis

Caregivers (ages 2–18): 120-minute bulletin board; $240.

Kidney Disease

C3G & IgA Nephropathy: 60-minute interview; $120.
FSGS: 20-minute survey; $40.
Polycystic Kidney Disease: 60-minute interview ($120) + 45-minute diary ($90) — total $210.

Leukemia / Lymphoma

CLL/NHL: 10-minute survey; $25.
Other NHL groups: 15-minute survey; $30.
CAR-T therapy patients & caregivers: 60-minute interview; $120.

Lung Cancer (NSCLC)

60-minute interview; $120.
30-minute survey; $90.
Year-long advisory board; $120/hr.

Lymphoma / Leptomeningeal Disease

Patients & caregivers: 60-minute interview; $120.

Macular Degeneration

Geographic Atrophy: 60-minute interview; $120.

Menopause (Hispanic Patients)

60-minute interview; $120.

Migraine

Patients: 60-minute interview; $120.

Multiple Myeloma

60-minute interview; $120.
Non-Caucasian patients: 30-minute interview; $60.

Muscular Dystrophy

Becker (18+) & caregivers (9–17): 60-minute interview; $120.
FSHD: 60-minute interview; $120.
FSHD/SMA patients & caregivers: in-person interview; $180.

Myasthenia Gravis

Patients: 60-minute interview; $120.

Mycobacterium Avium Complex / Nontuberculous Mycobacterial

45-minute survey; $90.
Additional studies: compensation varies.

Myelodysplastic Syndrome

60-minute interview; $120.
30-minute survey; $60.
90-minute patient interview ($175) + 60-minute caregiver interview ($125) + diagnosis confirmation ($75).

Narcolepsy

Patients (18–24 in Midwest/South): 40-minute survey; $80.

Neurofibromatosis Type 1

Patients & caregivers: 30-minute survey; $60.

Niemann-Pick Disease

Patients & caregivers: in-person interviews; compensation varies.

Bronchiectasis (Non-CF)

Patients on Brinsupri: ongoing surveys over 6 months; compensation per survey.

Ovarian Cancer

Patients: 60-minute interview ($120) + 30-minute pre-task ($80) — total $200.

Pancreatic Cancer

Patients & caregivers: 60-minute interview; $120.

Paroxysmal Nocturnal Hemoglobinuria

60-minute interview; $120.
Doctor-visit recording via app; $120.

Phenylketonuria

Patients & caregivers: 30-minute interview; $60.

Philadelphia Chromosome–Positive CML

Patients: 60-minute interview; $120.

POTS

Patients & caregivers: 60-minute interview + 40-minute survey; $200 total.

Prostate Cancer

Patients: 10-minute survey; $25.

Psoriasis / Psoriatic Arthritis

GPP: advisory board in Dallas; $95/hr + travel.
PSO / PsA (African American, Asian, Hispanic): 60-minute interview; $120.
Psoriatic Arthritis: 60-minute interview; $120.

Pulmonary Arterial Hypertension

Patients:
- 20-minute survey; $40.
- 60-minute interview; $120.
- 45-minute interview (Treprostinil users): $90.
- 30-minute interview (RemunityPRO Pump users): $50.

Renal Cell Carcinoma

Patients: 60-minute interview; $120.

Rheumatoid Arthritis

30–60-minute interview; $120.

Schizophrenia

Patients: 30-minute survey; $60.
Patients & caregivers: 60-minute interview; $120.

Scleroderma / Systemic Sclerosis

Patients: 45-minute interview; $100.

Sickle Cell Disease

Patients (18–30): 15-minute survey; $25 Amazon gift card.

Sjogren’s Syndrome

Patients (40–60) and males any age/race; non-Caucasian females: 60-minute interview; $120.

Spinal Muscular Atrophy

Patients (18+) & caregivers (2–18): 30-minute survey; $60.
Patients (18–25) & caregivers (2–17): 40-minute survey; $80.

Tardive Dyskinesia

Patients: 45-minute survey; $90.
Patients & caregivers: 25-minute survey; $50.

Thyroid Eye Disease

Patients: 30-minute survey; $70.

Ulcerative Colitis

Patients: 30-minute survey; $50.

Urticaria (Chronic Spontaneous)

Patients (18+) & caregivers (12+): 60-minute interview; $120.

VEXAS Syndrome

Patients: compensation varies.

Vision Impairment / Mobility Loss

Patients with a pet (Chicago IL): 120-minute in-person interview; $275.

Vitiligo

Patients (18+): 60-minute interview; $120.

Canada Studies

Kidney Disease: Complement-3 Glomerulopathy

Patients & caregivers: 60-minute interview + 30-minute homework; $180.

If you believe you might qualify—or know someone who would—consider sharing or signing up. Opportunities may come and go, but your experiences can truly help guide the next generation of treatments and patient support tools.

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!