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 diagnostic odyssey study where 3,471 Rare Patient Voice members contributed their feedback. Thanks for participating!
The study results included information provided by patients with 436 different conditions! There were 61 conditions which had more than 10 respondents. Here, we will focus on those with Ehlers-Danlos syndrome (EDS).
Ehlers-Danlos syndrome is a group of disorders that affect connective tissues that support skin, bones, blood vessels and other organs. This can result in a range of outcomes from loose joints to life-threating complications. Various gene mutations have been associated with the condition. It is diagnosed by symptoms and in some cases confirmed with genetic tests.
- Of all the diseases in our study with 10 or more responses, EDS showed the longest time to diagnosis with an average of over 21 years.
- Over three-quarters (77.6%) were misdiagnosed.
- EDS patients/caregivers noted taking an average of 24 tests and seeing over 15 physicians.
- Over 71% experienced a delay in treatment.
- About half (49%) had taken genetic tests and for two-thirds (66.7% ) the genetic tests led to the correct diagnosis.
Drum Roll Please!
Introducing Rarity! She is so happy to finally have a name. Rarity is very thankful that over 2757 of you cared enough to vote! Thanks for your help!
Congratulations Kristi B. for being the first to submit the name Rarity! Kristi will receive a $100 Amazon gift card for her submission!
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.
We are proud to partner with Rare Revolution Magazine, a digital magazine specifically for patients affected by RARE conditions. Click here to see their latest edition: https://bit.ly/RARENephrology
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!
Please note: These studies may no longer be open. For the latest studies, please visit the Study Opportunities page.
GI NET (Gastrointestinal Neuroendocrine Tumor)
60 min Web-Assisted Phone Interview and Compensation is $100
Hunter Syndrome Caregivers
90 min Zoom group meeting and Compensation is $150
Metastatic Melanoma Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Neuroendocrine Tumor (NET) Patients
60 min Phone Interview and Compensation it $100
Thyroid Eye Disease (TED) Patients
3 Hour Creative Web-Assisted Phone Interview and Compensation is $300
Liver Cancer Patients
2 Hour Online Focus Group and Compensation is $250
Hepatocellular Carcinoma Patients and Caregivers
30 min Online Survey and Compensation is $75
Bile Duct Cancer Patients and Caregivers
60 min Phone Interview and Compensation is $100
Organ Transplant Patients
60 min Phone Interview and Compensation it $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. Over the past eight years, Rare Patient Voice has paid patients over $6 Million dollars.
