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 the impact of rare diseases on patients and caregivers where 1,001 Rare Patient Voice members contributed their feedback. Thanks for participating!
A few key findings from this study include:
- The time required for dealing with their loved one’s disease takes away from personal and family activities and interactions.
- The emotional impact of rare disease is particularly high, with relatively more caregivers feeling anxiety, and more patients feeling depressed.
- The financial status of many families has been negatively affected, forcing many patients and caregivers to forego employment and educational opportunities, and to work part-time instead of full time.
- Lack of rare disease knowledge by many healthcare professionals and lack of awareness by others is a source of frustration to many patients and caregivers.
- Most patients and caregivers don’t feel the Affordable Care Act has made a difference in their care.
Reengineering Cancer Treatment
In July of 2018, Brad Power was diagnosed with lymphoma and went through a course of chemotherapy. Building on his experience with process reengineering and managing technology, he focused on helping others with a cancer diagnosis choose the best options for their treatment. Below is an excerpt from a recent article:
When awareness of the pandemic hit in March of this year, like all cancer patients, I was worried about what it meant to me. I knew I was highly vulnerable to a virus like COVID-19 since my immune system has been compromised by my cancer treatment. My oncologist advised me to hide out at our home in rural Maine. I learned that since I have had lymphoma and have taken medications to suppress my white blood cells, my immune system might not be able to develop antibodies to fight COVID-19, even if a vaccine is developed for it. I will need to depend on “herd immunity” – an indirect shielding of at-risk populations by the vaccinated or naturally immune populations. I have prepared myself for the possibility of being in self-quarantine for years.
For the full article at The Journal of Precision Medicine, please click here.
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.
Patients Rising is a national nonprofit organization dedicated to providing support and education to people with chronic and life-threatening illnesses. They work with patients to advocate for access to the treatments, innovations and care they need.
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 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!
Tyrosinemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125
Diabetes Patients
35 min Online Survey and Compensation is $55
Hemophilia or Von Willebrand Caregivers of adolescents in Chicago or Philly Areas
3 hour In Person Interview and Compensation is $450 plus Parking
Ulcerative Colitis Patients
35 min Online Survey and Compensation is $55
Amyotrophic Lateral Sclerosis Patients recently diagnosed
60 min Web-Assisted Phone Interview and Compensation is $100
Crohn's or UC Patients
15 min Online Survey and Compensation is $25
Parkinson's Disease Patients
60 min Web-Assisted Phone Interview and Compensation is $90
Transthyretin Cardiac Amyloidosis (ATTR-CM) Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200
Human Growth Hormone Deficiency Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200
Gaucher Disease Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200
Hemophilia Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200
Acromegaly Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200
Amyotrophic Lateral Sclerosis (ALS) Patients
30 min Online Survey and Compensation is $50
Metastatic Prostate Cancer Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Psoriatic Arthritis or Psoriasis Patients
60-min Online Chat Session and Compensation is $100
Paroxysmal Nocturnal Hemoglobinuria (PNH) Patients
60 min Online Survey and Compensation is $100
Ulcerative Colitis Patients
45 min Phone Interview and Compensation is $115
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.
