What's New at Rare Patient Voice?
Study Results - Sneak Peek
Patients trust the opinions and perspectives of other patients. In preparation for a presentation at an upcoming conference, Rare Patient Voice recently conducted a survey of over 2,000 patients and family caregivers on their feelings regarding television advertisements for treatments and medications. While the full results will be revealed this spring at the 2023 DTC National conference and we will share key highlights in upcoming newsletter issues, there was one finding we’ll share now that stood out. When asked the following question, the result was a landslide.
Which of the following do you prefer to see featured in TV advertisements for treatments and medications? Actual patients, celebrities, or animated characters?
The overwhelming response: actual patients.
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 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 is then notified via email. Congratulations to our latest winner, Marrit!
Partner Corner
Project Sebastian was started by the father of a young boy who was misdiagnosed with epilepsy at the beginning of their journey. Then he began losing his vision, his cognitive abilities slowly diminishing, and he had trouble walking and talking. The seizures were becoming more frequent as well. We finally said, "This is not just epilepsy; there is something else wrong with him." After thorough genetic testing, we realized he had CLN8, a variant of Batten disease. We were told that there was no cure and very few treatments available. Spend as much time with them as possible because he will not live past his teenage years.
Sebastian is ultra-rare. He is the only known human with a split gene mutation of Batten disease CLN8. We are now trying to get Sebastian onto other approved drug therapies as we know that gene therapy and other treatments are unavailable for him at this time and may never happen. We are still waiting.
So what to do now? How does one cope with defeat and letting your kids down? All the advocacy, fundraising, and talks about this disease weren't enough to help them. I try to lean on other rare families worldwide, but many of them felt just like me. I realized no one had a weekly support group to go to and talk about our fears. So I created one. We realize that connecting with other families is essential to this journey. Project Sebastian provides group meetings and counseling so that you can connect with others who are struggling like you.
We invite all families with rare diseases to join our weekly support group. In these meetings, you are not alone. Our meetings are held every Tuesday at 11:00am in person at the Henry Mayo Health and Education, 24525 Town Center, Drive Valencia, CA 91355, as well as on Zoom. You can find out more information about our meetings on projectsebastian.org.
Project Sebastian is also pleased to announce our second annual rare warrior 5 x 5 challenge! The rare warrior 5 x 5 will be held at Heritage Park, 24155 Newhall Ranch Road, Santa Clarita, CA 91355. This year's event will be on Saturday, May 20th and our first race (5K) will kick off at 8:00am with our second race (5mile) will begin at 8:20am Pacific time. To sign up for the race please visit: https://runsignup.com/Race/CA/Valencia/RareWarrior5x5
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! This month, meet Chris Cooper, Senior Project Manager for Rare Patient Voice.
Chris Cooper is a jack of all trades. He began working with Rare Patient Voice in 2018 doing video production and website management, and is now a Senior Project Manager. He obtained his Bachelor of Electrical Engineering at Southern Indiana University in 1996. Chris also earned a Masters in Information Technology with an emphasis on security and forensics at Kaplan University, where he met his wife, Jean; they have now been married for several years and have a daughter named Skyleigh.
“My favorite part of working with RPV is the company’s willingness to listen to its employees. There have been countless times over the years that staff have made suggestions, leadership listened, and new processes and procedures were adopted. I have worked for small firms as well as Fortune 500 companies and have found that is simply not the case in most corporate environments.”
In addition to his wife and daughter, Chris’s family includes two rescue dogs, Lilo and Gucci, and a cat named Holly. He is also an avid reef tank enthusiast.
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
NASH or Fatty Liver Disease (NAFLD) patients United States
45-minute online survey, compensation is $90
Mitochondrial Disease, Friedreich's Ataxia (FA), Phenylketonuria (PKU) patients United States
60-minute web-assisted phone interview, compensation is $120
Cerebral Palsy (CP) family caregivers and their children United States
60-minute web-assisted phone interview, compensation is a $330
Muscular Dystrophy (MD): Charcot Marie Tooth Disease (diagnosed between 2021 & 2023) patients and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Non-radiographic Axial Spondyloarthritis (nrAxSpA) or Ankylosing Spondylitis (AS) patients United States
30-minute online survey, compensation is $60
Breast Cancer patients United States
25-minute online survey, compensation is $50
Anemia patients United States
10-minute online survey, compensation is $25
Neurofibromatosis patients 25+ years and family caregivers of patients 18-25 years United States
60-minute web-assisted phone interview (WATI), compensation is $120
HIV Hispanic/Latino or Spanish patients United States
20-minute online survey, compensation is $35
Osteoporosis patients currently undergoing treatment United States
60-minute web-assisted phone interview (WATI), compensation is $90
Sickle Cell Disease patients 18-30 years old United States
60-minute web-assisted phone interview (WATI), compensation is $150
Bladder Cancer patients United States
60-minute web-assisted phone interview (plus a 30-minute homework assignment), compensation is $170
Acute Lymphocytic Leukemia (ALL) patients United States
Year long study, 60-minute web-assisted phone interviews (WATI), compensation is $150 per interview
Cardiomyopathy patients United States
30-minute online survey, compensation is $60
Tinnitus patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Chronic Kidney Disease patients (18-75 years) United States
60-minute web-assisted phone interview (WATI), compensation is $100
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview (WATI), compensation is $200
Friedreich's Ataxia (FA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Peyronie's Disease patients 25-70 years old United States
10-minute web-assisted phone interview (WATI), compensation is $75
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Melanoma patients United States
2 hour focus group, compensation is $200
Covid-19 male patients United States
60-minute web-assisted phone interview, compensation is $125
Macular Degeneration patients United States
20-minute online survey, compensation is $40
Small Cell Lung Cancer patients and caregiver United States
30-minute online survey, compensation is a $50 Amazon gift card
Thrombotic microangiopathy (TMA) patients and caregivers United States
15-minute pre-screening phone call (if you qualify then 60-minute web-assisted phone interview (WATI)), compensation is $30 for pre-screening call, $120 for 60-minute WATI
Melanoma, Cutaneous Squamous Cell Carcinoma patients and caregivers United States
60-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $120 + $30
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
45-minute web-assisted phone interview + Confirmation of Diagnosis(COD), compensation $122.50
Eczema (Atopic Dermatitis) caregiver United States
60-minute web-assisted phone interview, compensation is $120
Prurigo Nodularis (PN) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Neuromyelitis Optica (NMO), Thyroid eye Disease (TED), Gout patients United States
10-minute online survey, compensation is $25
Hereditary Angioedema (HAE) patients United States
60-minute web-assisted phone interview, compensation is $175
Asthma caregivers of children aged 1-17 with NO insurance United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients and caregivers to patients who have been/currently taking Padcev and/or Trodelvy United States
60-minute web-assisted phone interview, compensation is $120
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Head & Neck Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Pancreatic Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Immune Thrombocytopenic Purpura (ITP) patients United States
90-minute web-assisted phone interview, compensation is $150
Urticaria (Hives): Chronic Spontaneous patients aged 16 & 17 United States
90-minute web-assisted phone interview, compensation is $200
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
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.
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
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
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
Polycythemia Vera (PV) patients United States
In-person interview located in Chicago (IL), compensation is $720 (plus travel, meal and hotel reimbursement when applicable)
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 African American 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)
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
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
Canada
Bladder Cancer patients and caregivers to patients who have been/currently taking Padcev and/or Trodelvy Canada
60-minute web-assisted phone interview, compensation is 160 CAD
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
France
Bladder Cancer patients and caregivers to patients who have been/currently taking Padcev and/or Trodelvy France
60-minute web-assisted phone interview, compensation is 115 EURO
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients France
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Germany
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients Germany
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Spain
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients Spain
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
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.
