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. Here we will share some results from our study about patient and caregiver perceptions of advocacy groups and their roles in the recovery and treatment process where 3,455 Rare Patient Voice members contributed their feedback. Thanks for participating!
A few key findings from this study include:
- 46% of patients and caregivers were involved with an advocacy group.
- 54% of patients and caregivers were not involved with an advocacy group.
- Of those who were not involved in an advocacy group, there were several reasons noted:
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48.5% did not know of any relevant advocacy groups.- 26% did not have time to look for an advocacy group.
- 19.5% had other support options and did not feel the need to work with an advocacy group.
- 17.2% of patients and caregivers indicated that working with advocacy groups was inconvenient.
- 12.1% would rather face their rare disease on their own.
Partner Corner
Rare Patient Voice is fortunate to have many fantastic partners. In the Partner Corner, we will share a bit about our amazing partners.
The EPIC Foundation provides support, advocacy, and tools to those affected by chronic illnesses. The EPIC Foundation uniquely embraces the mind, body, and spirit, by focusing on key human issues such as trauma and loss. These are the vital issues that are commonly ignored while treating chronic illnesses.
Dr. Karen, founder and Executive Director of The EPIC Foundation, is inspired to be a voice for the voiceless “I want to encourage others to fight for their lives and to never give up.” To learn more about The EPIC Foundation, you can visit them here:
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
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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 Debi Crist at debi.crist@rarepatientvoice.com
- If you are NOT a member, please click on the study name to complete the sign-up process and include all medical conditions to be considered for that study and any other relevant studies.
Please feel free to share the link with friends or family who may qualify, and they’ll be invited to join Rare Patient Voice and invited to take part in the study!
NUT Carcinoma Patients
55 min Phone Interview and Compensation is $85
Hepatocellular Carcinoma Patients and Caregivers
30 min Online Survey and Compensation is $75
Patent Foramen Ovale Patients
60 min Phone Interview and Compensation is $100
Ankylosing Spondylitis Male Patients
60 min Zoom Call and Compensation is $100
Non-Small Cell Lung Cancer Patients & Caregivers
30 min Online Survey and Compensation is $50
Tyrosinemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125
Familial Hypercholesterolemia Patients
45 min Phone Interview and Compensation is $75
Psoriatic Arthritis Patients
45 min Phone Interview and Compensation is $75
Alopecia Caregivers
30 min Online Survey and Compensation is $50
Glaucoma Patients
7 min Online Mobile Friendly Survey and Compensation is $20
Immune Thrombocytopenic Purpura Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Ovarian or Fallopian Tube Cancer Patients
60 min Phone Interview and Compensation is $100
IgAN or aHUS Patients
60 min Phone Interview and Compensation is $125
Angelman Syndrome Patients or Caregivers
60 min Phone Interview and Compensation is $125
Pompe Disease Patients
30 min Web-Assisted Phone Interview and Compensation is $50
Breast Cancer Patients
10 min Online Survey and Compensation $25
Angelman Syndrome Caregivers
15 min Online Survey and Compensation $25
Pancreatic Cancer Patients
60 min Phone Interview and Compensation is $100
Non-Small Cell Lung Cancer Patients
60-min Telephone Interview and Compensation is $125 (+ $75 extra incentive for doctors note of diagnosis confirmation)
Ulcerative Colitis, Crohn's Disease, or Psoriatic Arthritis Caregivers of Pediatric Patients
60 min In-Person Interview in the Philadelphia area and Compensation is $150
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. Over the past seven years, Rare Patient Voice has paid patients over $5.3 Million dollars.
