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 highlights from a recent study we did on the diagnostic odyssey of rare disease patients. Many of you participated in this study. Thank you!
There are about 7,000 rare diseases. We surveyed 3,471 of our patients and caregivers across 436 different diseases. The story of the diagnostic odyssey is more relevant as 436 separate odysseys, as each disease or condition reveal different results. Across all the conditions, the average (mean) time to diagnosis was 4.4 years. The median time, however, was 1.1 years, indicating that half the sample came to their diagnosis in about a year. This also shows, many had a much more extended wait. On average, patients had seven medical tests taken to get to their diagnosis and saw four physicians. Nearly half (46%) were misdiagnosed along the way and nearly half (47%) believed their treatment was delayed. Nearly one-third (30.5%) reported having genetic tests taken and, among those, two-thirds (66.9%) stated that the genetic test led to the correct diagnosis. Three-quarters (76.8%) said their genetic tests were covered by insurance.
Chasing the Cure Book
Review by Wes Michael
Dr. David Fajgenbaum was a medical student a few years ago, in great shape, he’d been a college quarterback, when all of a sudden he knew he was dying. Many of his organs shut down, he was given last rites, they couldn’t figure out what was wrong with him. He had these near death experiences five times! And the treatments (full-fledged chemo) were often as bad as the disease. Eventually they figured out it was a rare disease, Castleman’s Disease. But there were no treatments. He pledged during one of his attacks that he would devote his life to finding a cure. He set up the Castleman Disease Collaborative Network to find drugs that are already out there that might help. He found one that is helping him! His team is using that same expertise now to fight Covid-19. He has written this book, I met him at a patient conference, and I recommend it! It is a gripping, motivating story – and it is even a love story! You can get it at Amazon or here.
We don’t get anything for these sales, we just want to spread the word.
Here is a link to recent video I did about this book: Click here to go to Youtube
Free 90-day Meditation App
Dealing with COVID-19 has been even more difficult for patients with rare and chronic conditions and their families. To try to ease some stress, we have partnered with Cloud 9 to provide you with a free meditation app called MediMind for 90 days. We hope you can use these meditations to provide comfort during this difficult period. Please download and share with your friends and loved-ones. Access a link here and enjoy:
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!
Please note: These studies may no longer be open. For the latest studies, please visit the Study Opportunities page.
Alzheimer's Disease or Mild Cognitive Impairment
Caregivers
This is a 30 min Online Survey and Compensation is $50
Cystic Fibrosis
Patients
60 min Web-Assisted Phone Interview and Compensation is $100
End-Stage Renal Disease
Patients
60 min Webcam Interview and Pre-Interview Activity and compensation is $350
ALS
Patients and Caregivers
35 min Online Survey and Compensation is $60
Pancreatic Cancer Caregivers of those that have passed away
Two 60-second Videos and Compensation is $500
Focal Segmental Glomerulosclerosis
Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Hyperoxaluria Type 1
Adult Patients or Caregivers of Children
60 min phone interview and compensation is $100
Breast Cancer Stage IV
Patients
60 min phone web-assisted phone interview and compensation is $150
Duchenne Muscular Dystrophy
Caregivers
60 min phone interview and compensation is $100
Type 1 & 2 Diabetes
Patients
15 min Online Survey and Compensation is $25
Autoimmune Encephalitis
Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Upcoming Study Opportunity: Progressive Supranuclear Palsy
Patients and Caregivers
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.
