What's New at Rare Patient Voice?
Celebrating Our 10th Anniversary
In 2013, Wes Michael founded Rare Patient Voice to help patients and family caregivers share their opinions with companies and researchers developing new products, services, and approaches to improving lives. Since then, RPV has grown from one employee (Wes) to 40 full and part-time staffers and a panel of 100,000+ in nine countries. Over the past decade, we have paid patients and family caregivers over $10 million for participating in research studies. This month, we announced that we have increased the honorarium for patients and family caregivers taking part in studies to $120 per hour!
Did you know that RPV is an entirely remote company? Though we communicate with each other every day over the phone, email, Teams, etc., many of our staff members had never met each other in person (even some who have been with RPV for years). That changed earlier this month with our first ever company retreat! Held in lovely St. Pete Beach, FL, the two day meeting featured team building exercises, expert speakers, and a donation project supporting a local Ronald McDonald House, with lots of smiles and great memories made. For more on the event, visit: https://rarepatientvoice.com/first-ever-rpv-company-retreat-takes-place-in-florida/
We Value Your Time
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we will automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner will be notified via email. Congratulations to our latest winner, William!
Partner Corner
LittleBricks Charity is a nonprofit that helps “Build BIG Smiles” on hospitalized kids. By delivering LEGO Sets and STEM Based Build Experiences to children’s hospitals, they are raising the mental health of kids that truly deserve to smile. They are currently working on their goal to help 75,000 hospitalized kids and delivering their services to EVERY children’s hospital in North America!
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! Each month we will feature one RPV staff member. This month, we are spotlighting Jennifer Harscheid, Project Manager.
What began as a phone call between friends led to a dream job for Rare Patient Voice Project Manager Jennifer Harscheid.
"I began working with Rare Patient Voice in September 2021, after talking with my friend Felecia about her role with RPV and the company’s mission," Jennifer recalls. "Personally having a loved one struggling with advancing Parkinson's Disease, being able to give patients and caregivers a voice, and knowing that we are helping advance research to help people worldwide struggling with diseases are just a few of the many reasons I love working with Rare Patient Voice."
Jennifer and her husband Glenn have been married for over 22 years and live in northwest Alabama with their children, Landon and Finley, and fur-babies Bella, Crosby, and Marshal. In her free time, she enjoys reading, sewing, knitting, and making candles and wax melts.
Mark Your Calendar - Free Webinar!
We are taking part in a webinar with our friends at Rare Revolution Magazine next month, and want you to join us! The Rare Voice: Patients, Family Caregivers, and Research will be a discussion of the benefits of participating in research, the different types of studies that patients and family caregivers can take part in, and more. Join us on Wednesday, February 1, 2023, at 11am ET for a lively conversation on sharing your voice and taking part in research, featuring RPV’s Pam Cusick, Lee Reavey from UK-based NCBRS (Nicolaides-Baraitser Syndrome is a rare genetic condition that is present at birth, is usually recognized during childhood, and can affect anyone; currently there are fewer than 270 confirmed cases worldwide), and hosted by Rare Revolution. It’s a great way to kick off rare disease month!
Book your place now: https://bit.ly/RARE-REVinar-RarePatientVoice
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
Amyloidosis patients and caregivers United States
Two in-person interviews (45-minutes on day one, and 60-minutes on day two), total compensation is $400
Opioid Addiction patients aged 18+ and are currently taking Buprenorphine (e.g. Sublocade) United States
60-minute web-assisted phone interview, compensation is $100
Progressive fibrosing interstitial lung disease (PF-ILD) patients currently on anti-fibrotics United States
40-minute web-assisted phone interview, plus a 50-minute homework assignment, compensation is $70 for the interview and $85 for the homework
Chronic Lymphocytic Leukemia (CLL) patients United States
30-minute online survey, compensation is $75
Non-Valvular Atrial Fibrillation (NVAF) patients United States
10-minute online survey, compensation is $25
Immune Thrombocytopenic Purpura (ITP) patients United States
90-minute web-assisted phone interview, compensation is $150
Breast Cancer (study 1) patients United States
30-minute online survey, compensation is $50
Amyloidosis, Chronic Heart Failure, Congestive Heart Failure, Chronic Heart Disease patients that are African American and between the ages of 18-79 United States
60-minute web-assisted phone interview, compensation is $120
aPAP (Autoimmune Alveolar Proteinosis) patients United States
60-minute web-assisted phone interview, compensation is $100
Urticaria: Chronic Spontaneous patients United States
60-minute web-assisted phone interview, compensation is $100
Urticaria (Hives):Chronic Spontaneous patients aged 16 & 17 United States
90-minute web-assisted phone interview, compensation is $200
Breast Cancer (study 2) patients United States
30-minute online survey, compensation is $50
Prostate Cancer patients and caregivers United States
2.5-hour video focus group, compensation is $275
Juvenile Rheumatoid Arthritis, Lupus, Hematological Cancer or Solid Tumor caregivers of patients aged 0-2 or 12-18 United States
60-minute web-assisted phone interview, compensation is $100
Sickle Cell caregivers of patients aged 0-2 or 12-18 United States
60-minute web-assisted phone interview, compensation is $100
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Spinal Surgery patients United States
25-minute online survey, compensation is $45
Pulmonary Arterial Hypertension (PAH) caregivers United States
60-minute web-assisted phone interview, compensation is $100
Pulmonary Arterial Hypertension (PAH) patients United States
120-minute focus group, compensation is $200
Prader Willi Syndrome (PWS) caregivers United States
60-minute focus group, compensation is $100
Multiple Sclerosis (RRMS or SPMS) patients who are on Kemsimpta or Fumartes United States
20-minute online survey, compensation is $35
Pulmonary Arterial Hypertension (PAH) Male patients age 16+, and Male caregivers of patients ages 1-17, who are non-Caucasian United States
There will be a preliminary 20-30-minute telephone interview; If you are not selected for focus group sessions, you will be paid $35 for the preliminary interview. If you are accepted into the focus group you will participate in 1-2-hour focus group sessions with 3-4 sessions throughout the year, compensation for the focus group is $100 per hour.
High Triglycerides, High Cholesterol patients United States
60-minute web-assisted phone interview, plus a three-day online journal (two hours' time invested in the diary), and a 30-minute honing call, compensation is $100 for the initial interview, $200 for the online diary, and $50 for the honing call
Lung Cancer patients United States
2.5 hour online journal (with possible opportunities to have follow-up interviews for additional compensation), compensation for the online journal is $335
Diffuse Large B-Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Hidradenitis Suppurativa (HS) patients who are HS social media influencers with at least 1k followers United States
3-hour focus group, compensation is $450
Hidradenitis Suppurativa (HS) male patients United States
60-minute web-assisted phone interview, compensation is $80
Multiple Myeloma patients and caregivers aged 40+ United States
60-minute web-assisted phone interview, compensation is $100
Chronic kidney disease (CKD) patients that have been also diagnosed with anemia United States
60-minute phone interview, compensation is $100
Prurigo Nodularis (PN), patients United States
10-minute online survey to see if you qualify for an online community, compensation is a $10 gift card which will be awarded to those that are accepted into the online community, with potential for monthly gift card rewards based on community participation
Hypoparathyroidism caregivers of adolescent patients United States
45-minute web-assisted phone interview (with both the patient and caregiver at the same time), compensation is $75 (per participant)
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
Prostate Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Bronchiectasis male patients United States
Two day in-person interview, four hours per day, compensation is $1,200 (as well as travel expenses)
Amyotrophic Lateral Sclerosis (ALS) patients who were recently diagnosed and/or those who noticed symptoms within the last 4.5 years United States
60-minute web-assisted phone interview, compensation is $175
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Type 2 Diabetes patients who have a T2D-specific appointment before November 23rd United States
45-minute web-assisted phone interview, compensation is $75
Congestive and/or Chronic Heart Failure patients and caregivers that are age 18+ United States
20-minute online survey, compensation is $35
Myasthenia Gravis patients United States
5-minute online survey for medical history platform, compensation is $25
Endometrial Cancer patients United States
50-minute web-assisted phone interview, compensation is $100
Polycythemia Vera (PV) patients United States
In-person interview located in Chicago (IL), compensation is $720 (plus travel, meal and hotel reimbursement when applicable)
Primary Immunodeficiency (PID) caregivers United States
30-minute online survey, compensation is $50
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Polycythemia Vera (PV) and/or Graft Versus Host Disease (GVHD) patients United States
45-minute web-assisted phone interview, compensation is $75
Multiple Myeloma non-Caucasian patients that are age 55+ United States
60-minute online focus group sessions with 3-4 sessions throughout the year, compensation is $100 per hour of focus group participation
Colorectal (Colon) Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Multiple Myeloma African American patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Myopathy patients United States
60-minute web-assisted phone interview, compensation is $100
Pompe Disease: Infantile Pompe Disease & Late Onset Pompe patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Lupus Nephritis patients United States
This is a 5-minute survey for a medical history platform and there is no compensation
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
IgA nephropathy (Berger's Disease) patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Immunoglobulin A Nephropathy (IgAN) patients United States
60-minute web-assisted phone interview, compensation is $175
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Huntington's Disease patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Urinary Tract Infection (UTI) patients age 60+ United States
30-minute web-assisted phone interview, compensation is $80
Pompe Disease patients United States
5-minute online survey for medical history platform, compensation is $20
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
United Kingdom
High Triglycerides, High Cholesterol patients United Kingdom
60-minute web-assisted phone interview, plus a three-day online journal (two hours' time invested in the diary), and a 30-minute honing call, compensation is 95 GBP for the initial interview, 190 GBP for the online diary, and 45 GBP for the honing call
Canada
Leukemia patients and caregivers Canada
90-minute web-assisted phone interview, plus a 30-minute homework assignment, compensation is 400 CAD
Germany
Fragile X Syndrome patients and caregivers Germany
75-minute web-assisted phone interview, compensation is EUR 200
Breast Cancer, Lymphoma and Multiple Myeloma patients Germany
30-minute web-assisted phone interview, compensation is EUR 110
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?
As of January 1, 2023, you will earn $120 per hour for participating in new studies. We pay by check to ensure patients can use their compensation in any way they wish.
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 $10 million dollars since 2013 for participating in research studies.
