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. We recently did a study about telehealth and here are some preliminary results. Thank you!
- Patients and Caregivers who have participated in telehealth visits were generally satisfied with the experience.
- In the future, the majority of patients and caregivers would consider telehealth to replace some of their appointments.
- Top reasons that patients and caregivers are in favor of telehealth include:
-
- Safer for me during COVID-19
- No need to travel
- Convenience (less driving, no parking issues etc.)
- Saves time
- Top reasons that patients and caregivers are not in favor of telehealth
-
- Not as precise as in-person
- Technology glitches
- Delays treatment of symptoms
- Not covered by my insurance
Dear Hemophilia: Finding Hope through Chronic Illness
Book Review by Wes Michael
Cazandra Campos-MacDonald is one of our Rare Patient Voice panelists, a caregiver for two boys who have hemophilia. She writes a moving personal story about dealing with their blood disorder. Since most hemophilia is inherited, parents realize the possibility that their sons may have hemophilia. Cazandra and her husband were not aware of any hemophilia in their families, so when her first son, Julian, was born, it was a shock when he was diagnosed with Hemophilia. Like many families, not only with hemophilia but many rare diseases, they had to learn to deal with this disease - so much self-educating to do! Since there wasn’t a known family history, it was assumed Julian’s hemophilia was from a spontaneous mutation. So the odds of having another child with hemophilia were low. But 10 years later, when her second son Caeleb was born, imagine their surprise when he also had hemophilia! They thought they knew everything there was to learn about Hemophilia, and the hard-to-treat inhibitors, with Julian. They were in for a shock with Caeleb – the same disease is not the same in every patient. They had a much more difficult time with the second son.
Cazandra is able to piece together the puzzle of hemophilia in her family history. She had a brother who died after only 5 days. From what she could discover, that boy had hemophilia. So hers were not spontaneous mutations, the hemophilia genes were in her family, and she was a carrier.
Others not only with hemophilia in their family, but many other conditions, will gain inspiration from her honest story. The highs and lows, the mental anguish, the difficulty, but certainly the love and the mama bear ferocity with which she does what she can for her boys. You can order “Dear Hemophilia: Finding Hope through Chronic Illness” on Amazon!
Mascot name final voting!
Thanks to everyone who submitted names for our new Rare Patient Voice mascot! We received nearly 700 name submissions. Wes made a video about the process, click here to watch https://youtu.be/peKtmy0Bysk.
We have pulled out the top names which were mentioned most frequently.
Please click here to vote for your favorite: [Link removed - voting has ended]
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! 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.
Narcolepsy Caregivers of Patients 18 and under
60 min Web- Assisted Phone Interview and Compensation is $100
Multiple Sclerosis Patients
40 min Online Survey for $70, plus an optional add-on 20 min Survey for $35
Metastatic Colorectal Cancer Patients
90 min Webcam Interview and Compensation is $150
NUT Carcinoma Patients
55 min Phone Interview and Compensation is $85
Walking Device Patients in the Philadelphia Area
60 min In-Person Interview and Compensation is $150 plus Parking
Prostate or Lung Cancer Patients
20 min Online Survey and Compensation is $35
Neuroendocrine Tumor NET Patients
60 min Zoom Interview and Compensation is $100
Achondroplasia Caregivers of Children 3-13 Years Old
90 min Webcam Interview and Compensation is $150
Severe Primary IGF-1 Deficiency Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125
Lymphoma Patients who had CAR T Therapy
60 min Phone Interview plus 10 min homework and Compensation is $120
Legg-Calve Perthes Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Chronic Pain Patients
60 min Phone Interview and Compensation is $100
Psoriatic Arthritis Patients
60 min Web-Assisted Phone Interview and Compensation is $115
Breast Cancer Patients
30 min Web-Assisted Phone Interview and Compensation is $50
Myelofibrosis Patients and Caregivers
30 min Phone Interview and Compensation is $50
Hunter Syndrome Caregivers
90 min Zoom group meeting using a webcam and Compensation is $150
Asthma Patients who have started on a biologic
45 min Phone Interview and Compensation is $75
Hereditary Angioedema Patients
15 min Online Survey and Compensation is $25
Hepatocellular Carcinoma Patients and Caregivers
30 min Online Survey and Compensation is $75
Physician Confirmation Required
Bile Duct Cancer Patients and Caregivers
60 min Phone Interview and Compensation is $100
Rheumatoid Arthritis Patients Clinical Trial Opportunity
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.
