What's New at Rare Patient Voice?
Study Results
While Rare Patient Voice does not have access to the results of studies conducted by our clients, we do conduct internal studies from time-to-time and share these results back with those who participated. In a recent study about telehealth, we interviewed n=494 patients and caregivers from the Rare Patient Voice community. Over 114 different diseases were represented in this study. Over the prior three months, 65% of respondents had participated in a telehealth appointment. Below are some reasons that patients and caregivers are in favor of telehealth:
Below are some reasons patients and caregivers are not in favor of telehealth:
Partner Corner
The Ear Community Organization is a parent driven nonprofit organization & leading helpful resource for helping children & adults who have Microtia (missing or underdeveloped outer ears) & Aural Atresia (missing ear canals, resulting in hearing loss).
Support:
The Ear Community offers support to Microtia and Atresia families through our online support groups & through our website. Our organization offers guidance to families & provides educational information to inform about all options for Microtia & Aural Atresia, donates hearing devices & awards college scholarships. Our organization brings families together at our events & educates them, allowing for everyone to come together in the same situation & know they are not alone.
Awareness:
It is Ear Community’s mission to promote educational & public awareness about Microtia & Atresia and hearing loss, in an unbiased manner, while promoting advocacy & connecting individuals in the same situation. Ear Community also established National Microtia Awareness Day which takes place every November 9th. National Microtia Awareness Day is embraced by families & medical professionals worldwide. The purpose of National Microtia Awareness Day to help promote public awareness of Microtia & Atresia. It is our hope that families who have new babies born with microtia will leave the hospital armed with more answers than questions, & their dreams for their children intact. If more people learn about Microtia and Atresia, they will be kinder & more accepting.
Research:
The Ear Community Organization has embarked on genetic research in hopes that we can understand why Microtia & Aural Atresia happens. Ear Community is on a genetic research grant in collaboration with Harvard, Vanderbilt & the MIT Broad Institute. We are hopeful that the findings from our whole genome research project will shed light on our rare cause allowing us to understand Microtia & Atresia more & allowing us to update current statistics & information about this rare congenital condition.
Advocacy:
Our Ear Community Organization advocates for our community members in many ways. Currently, our organization has federal legislation in place that will help ensure private insurers cover osseointegrated hearing devices, including Bone Anchored Hearing Aids & Cochlear Implants. Our bill is known as Ally’s Act with bill numbers being H.R. 477 & S. 41. Please visit our website to learn how you can help support Ally’s Act.
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
https://
Current Study Opportunities
We currently have over 100 studies open for patients and caregivers! A few of the studies we are working to fill immediately are listed below.
- 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. - If you are NOT a member, please 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 be interested!
Alcohol use Disorder Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Adrenoleukodystropy Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $150
Hereditary Amyloidosis Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Patent Foramen Ovale (PFO) Patients
Two 45 min Web-Assisted Phone Interviews and Compensation is $150
Alpha 1 Antitrypsin Deficiency Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $90
Non Small Cell Lung Cancer Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Multiple Myeloma or Diffuse large B-cell lymphoma Patients
90 min Phone Interview and Compensation is $150
COPD Patients
45 min Web-Assisted Phone Interview and Compensation is $105
Nasal Polyps Patients
60 min Web-Assisted Phone Interview and Compensation is $125
Ovarian and Fallopian Tube Cancer Patients Diagnosed 2016-2021
60 min Web-Assisted Phone Interview and Compensation is $100
Alzheimer's Disease Patients and Caregivers
45 min Web-Assisted Phone Interview and Compensation is $75
Diffuse Large B-Cell Lymphoma Patients and Caregivers
10 min Survey and Compensation is $40
Limb-girdle Muscular Dystrophies Patients
60 min Webcam Interview and Compensation is $125
Prostate Cancer Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Achondroplasia Caregivers
30 min Online Survey and Compensation is $50
Cytomegalovirus Patients for a Clinical Trial
Prostate Cancer Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Achondroplasia Caregivers
30 min Online Survey and Compensation is $50
Follicular Lymphoma Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Osteoporosis Patients in the UK only
60 min Web-Assisted Phone Interview and Compensation is $70
Prurigo Nodularis Patients
90 min Web-Assisted Phone Interview and Compensation is $150
Generalized Pustular Psoriasis (severe subtype of Psoriasis) Canadian Residents
30 min Web-Assisted Phone Interview and Compensation is $50
Ovarian Cancer Patients and Caregivers (Diagnosed in the last 18 months)
60 min Web-Assisted Phone Interview and Compensation is $125
Esophagus (Esophageal) Cancer Patients
75 min Web-Assisted Phone Interview and Compensation is $125
Polycythemia Vera Patients
60 min Web-Assisted phone Interview and Compensation is $100
Bladder Cancer Canada Residents
60 min Web-Assisted phone Interview and Compensation is $100
Neuromyelitis Optica (NMO)
30 min Zoom Interview and Compensation is $30
Allogeneic Hematopoietic Stem Cell Transplant Patients and Caregivers
60 min Web-Assisted phone Interview and Compensation is $100
Melanoma Patients Clinical Trial
Bullous Pemphigoid Patients Age 70 plus
Mantle Cell Lymphoma Patients
60 min Web-Assisted Phone Interview and Compensation is $100
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 $100 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish.
How will I be paid?
You will earn $100 (USD) per hour for participating in 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. Since 2013, Rare Patient Voice has paid patients over $8 million dollars.
