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. In a recent study across 15 conditions, patients were asked a number of thought provoking questions about their conditions.
One of the questions was: Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges? Here are a few responses from our patients with Pulmonary Arterial Hypertension and their caregivers:
- I have accepted pulmonary arterial hypertension and its symptoms. Unfortunately, as my new normal, I have to take an oxygen tank no matter where I go, the frustrations are, I can no longer do the things that I used to be able to do. Showering is a very difficult chore for me to do. There are lots of things that I used to be able to do that I can no longer do.
- My condition impacts my day-to-day life, basically putting me at high risk. So in the current days, it affects my ability to even go to work, because I have a doctor’s note putting me at a high risk. So, I am currently worried about losing my job because I’ve been out of work since the middle of March. So I’m trying to work with my work to do a medical leave of absence, that I can at least maintain my employment.
- I’d say that just about every aspect of my day to day life is impacted. The ones that are most impacted are the ones that surround activity, so things like doing chores, going food shopping, trying to exercise are all very, very, very much more complicated. It’s frustrating that I have to deal with these physical limitations and it’s also frustrating that nobody can see my disease without my oxygen on. Some of the things that I’ve done to adjust are doing things like trying to make my movement as efficient as possible, so that everything that I have to do as far as moving, is concerned, take as few movements as possible. I’ve also done things like gotten a disability placard, so I don’t have to walk as far and that kind of thing.
Partner Corner
International Pemphigus & Pemphigoid Foundation (IPPF)
The mission of the IPPF is to improve the quality of life of those affected by pemphigus and pemphigoid through early diagnosis and support. We do this through the 4 main pillars of the IPPF.
- Patient Support
The IPPF offers a variety of free patient services to help you live an active, productive life. These include our Peer Health Coach program, Patient Education Webinars, local and regional support groups, Find a Doctor map, annual Patient Education Conferences, and educational resources. These are just some of the ways to connect with the pemphigus and pemphigoid (P/P) community.
- Awareness
The IPPF Biopsies Save Lives program seeks to accelerate the diagnosis time of pemphigus and pemphigoid (P/P) patients. The average P/P patient sees five doctors over ten months in search of a correct diagnosis. Since the majority of P/P patients present oral symptoms first, the Biopsies Save Lives program focuses on pemphigus vulgaris (PV) and mucous membrane pemphigoid (MMP)—two forms of P/P with an increased presentation in the mouth. PV/MMP patients often see a dentist as one of their first clinician contacts. Outreach is therefore directed to dental professionals through student and continuing education, who have the unique opportunity to shorten diagnosis times.
- Research
Before new treatment therapies can be developed, investigators need to better estimate the prevalence of P/P, study their pathophysiology, understand treatment patterns, and assess the burden of these diseases on patients. The IPPF encourages research by conducting our Natural History Study, hosting scientific symposia, periodically offering research grants, and maintaining a library of clinical trial information for researchers and healthcare professionals.
- Advocacy
Advocacy is defined as public support or recommendation for a particular cause. Advocacy is different from lobbying, which looks to influence a particular elected official or legislation. Advocacy can take place at local, state, or federal levels of government. The IPPF mainly advocates for patients at the federal level, but we encourage our community to support grassroots efforts through various umbrella organizations.
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!
Hodgkin's Lymphoma Patients and Caregivers
30 min Online Survey and Compensation is $50
Diffuse Large B-Cell Lymphoma Patients
20 min Online Survey and Compensation is $100
Chronic Inflammatory Demyelinating
Polyradiculoneuropathy (CIDP) Patients and Caregivers
60 min Phone Interview and Compensation is $100
Prostate Cancer Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Achondroplasia Caregivers
30 min Online Survey and Compensation is $50
Follicular Lymphoma Patients or Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Osteoporosis Patients in the UK only
60 min Web-Assisted Phone Interview and Compensation is $70
Cytomegalovirus Patients for a Clinical Trial
Prurigo Nodularis Patients
90 min Web-Assisted Phone Interview and Compensation is $150
Generalized Pustular Psoriasis (severe subtype of Psoriasis)
30 min Web-Assisted Phone Interview and Compensation is $50
Ovarian Cancer Patients and Caregivers (Diagnosed in the last 18 months)
60 min Web-Assisted Phone Interview and Compensation is $125
Esophagus (Esophageal) Cancer Patients
75 min Web-Assisted Phone Interview and Compensation is $125
Atopic Dermatitis Patients
30 min Online Survey and Compensation is $50
Polycythemia Vera Patients
60 min Web-Assisted phone Interview and Compensation is $100
Tardive Dyskinesia Patients and Caregivers
75 min Web-Assisted Interview and Compensation is $125
Bladder Cancer Canada Residents
60 min Web-Assisted phone Interview and Compensation is $100
Neuromyelitis Optica (NMO) MALE Patients
30 min Zoom Interview and Compensation is $30
Warm Autoimmune Hemolytic Anemia
75 min Phone Interview and Compensation is $150
Allogeneic Hematopoietic Stem Cell Transplant Patients and Caregivers
60 min Web-Assisted phone Interview and Compensation is $100
Melanoma Patients Clinical Trial
Hypoparathyroidism Patients
60 min Phone Interview and Compensation is $100
Acromegaly Patients
45 min Online Survey and Compensation is $75
Knee or Hip Replacement Patients
40 min Online Survey and Compensation is $70
Patients of (Surgery): Cardiovascular, Ear, Nose or Throat, Gastrointestinal, Gynecological, Neurosurgery or Orthopedic
60 min Web-Assisted Phone Interview and Compensation is $100
SMA Patients and Caregivers
45 min Web-Assisted Phone Interview and Compensation is $75
Bullous Pemphigoid Patients Age 70 plus
60 min Web-Assisted Phone Interview and Compensation is $100
Overactive Bladder Male Patients
90 min Web-Assisted Phone Interview and Compensation is $150
Psoriatic Arthritis MALE Patients
90 min Web-Assisted Phone Interview and Compensation is $125
Multiple Myeloma Patients and Caregivers
60 min Phone Interview plus Homework and Compensation is $150
Primary Central Nervous System Lymphoma (PCNSL) Patients
60 min Phone Interview and Compensation is $100
Lung Cancer Patients in Columbus or Cincinnati, Ohio
60 min In-Person Interview and Compensation is $150
Small Cell Lung Cancer Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Scleroderma Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Eosinophilic Esophagitis Patients
45 min Web-Assisted Phone Interview and Compensation is $175
Prostate Cancer Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100
Mantle Cell Lymphoma Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Non-Small Cell Lung Cancer Patients and Caregivers
120 min Online Survey and Compensation is $160
Alcohol use Disorder Patients
60 min Web-Assisted Phone Interview and Compensation is $100
Non Small Cell Lung Cancer Patients and Caregivers
40 min Online Survey and Compensation is $70
Cystic Fibrosis Patients and Caregivers
15 min Online Survey and Compensation is $25 Gift Card
Adrenoleukodystropy Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $150
Psoriasis Patients
20 min Online Survey and Compensation is $35
Chronic Inflammatory Demyelinating
Polyradiculoneuropathy (CIDP) Patients Canada and Germany Residents Only
60 min Phone Interview and Compensation is $100
Multifocal Motor Neuropathy Patients Canada and Germany Residents Only
60 min Phone Interview and Compensation is $100
Hereditary Angioedema MALE Patients
60 min Phone Interview and Compensation is $100
Patent Foramen Ovale (PFO) Patients
Two 45 min Web-Assisted Phone Interviews 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 eight years, Rare Patient Voice has paid patients over $6 Million dollars.
