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 voice-response study conducted with our partner inVibe, n=250 Rare Patient Voice patients and caregivers shared their insights. The questions were designed to inspire people to share deeply personal stories. Patients and caregivers with Pulmonary Arterial Hypertension (PAH) were asked: 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? Responses included:
- 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.
- My day to day life has been impacted greatly. I need help with all of my daily living necessities, like cleaning, cooking, even making a simple meal is difficult. I can’t vacuum, I can’t sweep, I can’t do laundry. Can’t garden. I have to be careful of how hot it is, how cold it is. It’s very frustrating at times because you can’t just get up and go.
- I would say the biggest challenge is fatigue. It seems that no matter what I do, as far as eating healthy, taking my meds, exercising even, I always seem to have just this overall tiredness that it’s hard to deal with.
- Hi. My pulmonary hypertension affects my day-to-day life every day. I don’t know what to expect, how I’m going to feel. Some days I’m so tired I can’t get out of bed. Other days I could go and do all kinds of errands or running around and be fine.
Partner Corner
Grace B. Charrier is an author of the interesting memoir "IMPOSSICANT!" which highlights her experience with late-stage breast cancer. Her memoir gives hope, encouragement, and positivity to anyone going through cancer or any other chronic illness. Those who have read it use it as a kind of "hands-on" guide on how to overcome such a challenging illness by gradually changing their mindsets. A great deal of humor is found in the book as Grace believes that humor goes a long way in healing and recovery, and she can personally testify to this.
Grace's YouTube show, Cancer Convos with Grace B shares evidence-backed information about cancer and other health-related issues. She hosts well-respected experts and stakeholders to share their diverse insights while demystifying cancer. Health literacy and health communication are vital in our industry and her platform, Cancer Convos with Grace B takes it up several notches.
Check out Cancer Convos with Grace B here!
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 190 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 here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.
Please feel free to share this page with friends or family who be interested!
Diffuse Large B-Cell Lymphoma Patients and Caregivers US CLIN_4646
20 min Survey and Compensation is $100
Generalized Pustular Psoriasis (severe subtype of Psoriasis) Canadian Residents CA LMA_4836
30 min Web-Assisted Phone Interview and Compensation is $50
Allogeneic Hematopoietic Stem Cell Transplant Patients and Caregivers US TRI_4917
60 min Web-Assisted phone Interview and Compensation is $100
Mantle Cell Lymphoma Patients US
60 min Web-Assisted Phone Interview and Compensation is $100 MO_4159
Alpha 1 Antitrypsin Deficiency Patients and Caregivers US CHP_5031
60 min Web-Assisted Phone Interview and Compensation is $90
COPD Patients US SHG_5019
45 min Web-Assisted Phone Interview and Compensation is $105
Alzheimer's Disease or Dementia Patients and Caregivers US ZS_4998
45 min Web-Assisted Phone Interview and Compensation is $75
Inclusion Body Myositis (IBM) Patients and Caregivers US LR_5087
60 min Diary / 60 min Interview and Compensation is $100 each Interview
Acute Lymphoblastic Leukemia (ALL) Patients and Caregivers US ZS_5059
45 min Web-Assisted Phone Interview and Compensation is $75
Thalassemia Patients and Caregivers US MI_5108
60 min Web-Assisted Phone Interview and Compensation is $100
Hemophilia A and B Patients UK INCI_5096
60 min Web-Assisted Phone Interview and Compensation is £ 73
Hemophilia A and B Patients US INCI_5096
60 min Web-Assisted Phone Interview and Compensation is $100
Warm Autoimmune Hemolytic Anemia Patients US GLG_5132
60 min Web-Assisted Phone Interview plus 30 min Pre-Work and Compensation is $135
Paroxysmal Nocturnal Hemoglobinuria (PNH) Patients and Caregivers US MI_5156
60 min Zoom Interview and Compensation is $100
Bladder Cancer Patients and Caregivers US M3_5161
60 min Webcam Interview and Compensation is $100
Hepatitis D Patients US GP_5162
75 min Web-Assisted Phone Interview Plus 30 min Pre-Work and Compensation is $190
Multiple Conditions - Pompe Disease, Huntington’s Disease, or Rett Syndrome Patients and Caregivers US OPTU_5089
60 min Web-Assisted Phone Interview and Compensation is $100
Chronic Spontaneous Urticaria (Chronic Hives) Patients US ZS_5135
60 min Web-Assisted Phone Interview and Compensation is $100
Non-Small Cell Lung Cancer Patients & Caregivers US
60 min Phone Interview and Compensation is $100
Multiple Cancer Study- Diffuse Large B-Cell Lymphoma, Mantle Cell Lymphoma, Follicular Lymphoma, or Acute Lymphoblastic Leukemia Patients and Caregivers US HEU_5233
20 min Online Survey and Compensation is $25
Type 2 Diabetes Caregivers of children who use Libre US DYN_5165
100 min Web-Assisted Phone Interview and Compensation is $170
Transplant Recipient (Liver, Heart, Lung or Kidney) Patients US ALP_5195
60 min Web-Assisted Phone Interview and Compensation is $100
Diffuse Large B Cell Lymphoma Patients US SCH_5066
25 min Online Survey and Compensation is $45
Spinal Muscular Atrophy Patients and Caregivers US ZS_3610
30 min Online Survey and Compensation is $50
Organ Transplant Patients US AV_5244
60 min Phone Interview and Compensation is $120
Respiratory Syncytial Virus Caregivers US MCY_5250
90 min Phone Interview and Compensation is $150
Alopecia Patients Canada ENS_5240
60 min Web-Assisted Phone Interview and Compensation is $225
Hepatitis C Patients US IQV_5205
60 min Phone Interview and Compensation is $146
Prostate Cancer Patients US MP_5263
60 min Web-Assisted Phone Interview and Compensation is $100
Scleroderma Patients US WISE_5231
45 min Web-Assisted Phone Interview and Compensation is $125
Myositis Patients US PHARV_5256
60 min Web-Assisted Phone Interview and Compensation is $100
Acute Myeloid Leukemia Patients US GP_5140
90 min Web-Assisted Phone Interview and Compensation is $200
Mucopolysaccharidosis II Patients & Caregivers US CHP_5262
60 min Phone Interview and Compensation is $100
Exocrine Pancreatic Insufficiency Patients US ALP_5252
60 min Phone Interview and Compensation is $100
Cystic Fibrosis Patients and Caregivers US TRI_5051
60 min Phone Interview and Compensation is $100
Depression Patients US BRN_5270
60 min Online Survey and Compensation is $100
Type 1 Diabetes Caregivers US MED_5277
25 min Online Survey and Compensation is $45
Respiratory Disease Patients US KJT_5268
25 min Online Survey and Compensation is $45
Autosomal Dominant Polycystic Kidney Disease Patients US INC_5260
45 min Web-Assisted Phone Interview and Compensation is $75
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.
