What's New at Rare Patient Voice?
Real & Rare with Sarah: Make Time for You
RPV’s Marketing department was recently joined by a summer intern through a collaboration with Rare Revolution Magazine! Sarah Nesheim is a patient advocate who lives with a rare disease herself. “I am extremely passionate about advocating for patients and their families. During my time with RPV, I hope to learn and grow alongside each and every one of you. My goal is to make a lasting impression within the patient and client community through my writing of personal and professional experiences,” said Sarah. In her latest blog for RPV, Sarah is tackling an important topic: self-care.
As someone who has been living with a rare disease diagnosis for eight years, I often get asked this one question over and over again: “What advice would you give to someone who is newly diagnosed?” My answer has varied over the years, however one thing that might be overlooked is the concept of self-care.
When you are first diagnosed, and to be honest all throughout this patient journey, we feel a range of emotions. We are quickly thrown into this new world with absolutely no clue how to survive in it. You lose your sense of self and have no idea if you’ll ever find your way back again. Suddenly, the life that you had created for yourself and the path you chose to be on is taken from you.
To give you some personal context, I was diagnosed at 28 years old. I had just finished grad school and was ready to start my career as a mental health therapist. With one phone call my life was no longer about creating my own life, it was about saving it. Instead of dressing up to go out on dates, I was forced into a hospital gown. Instead of signing a job offer, I was signing treatment consent forms. I was told what time to show up to appointments, what treatments to receive, what pills to take and how many times per day. I was told several things by my doctors, by nurses, by my parents and friends. Do this, do that, try this, avoid that. This was no longer my life. This was no longer me.
It took me a long time to find my voice again and learn how to use it. Seeing a therapist was my first tool that helped me process my diagnosis and slowly start to rebuild my sense of self. It’s important that we all figure out what works best for us. One size does not fit all here. My self-care routine is practicing yoga, going for walks, visiting friends, seeing my therapist, and writing, to name a few. It is so important in this busy world that we slow down and really listen to what our minds and bodies need. Do something that brings you joy. My diagnosis has helped me slow down and appreciate the little things in life, that are actually the big things. I would encourage you to find your own self-care routine that fits for you. I believe that in taking these steps, we can start to rebuild ourselves and take back the little pieces that were lost along the way. What is just one thing you can do for self-care today?
New on the Bookshelf
This month, RPV’s President Wes Michael reviews On Fire: Reflections on a Journey Through Life with Parkinson’s Disease, by A.C. Woulnough.
I prefer books with short chapters, maybe because I usually read a few pages each night before I fall asleep, and I love it when I can stop at the end of a chapter. So A.C. Woolnough's book, On Fire: Reflections on a Journey Through Life with Parkinson’s Disease, was a perfect read for me. A.C.'s book is a collection of essays that originally appeared in newspapers and magazines, so each chapter is a short, focused, self-contained article.
In case you are wondering (I was, so I asked A.C.), Woulnough is pronounced "wool - no."
These are all great stories. They are not necessarily about Parkinson's Disease, that insidious movement disorder that affects so many, as they are about A.C.'s life and how Parkinson's has affected him. It's great to listen as he relates going to conferences, sharing his blood, and studying research proposals that he only partially understands to help award dollars for research. Or petitioning Congress for more spending on the disease - through the unlikely channel of the Department of Defense! But his stories about people - his father, his wife, his son, and grandson, other PD warriors, and genius medical researchers - are what captured me the most. After all, that is what I like to read about most - people and their lives.
Did you know that many Parkinson's patients lose their sense of smell years before they are diagnosed with PD? It makes me worry - so many have lost their sense of smell from COVID - could Parkinson's be in their future?
The good news is that A.C. is planning a second volume, Still on Fire, to come out next year. I can't wait! To find out about ordering a copy of On Fire, please email A.C. directly at acwooly@gmail.com.
Wes
Partner Corner
June is Hidradenitis Suppurativa (HS) Awareness Month. Do you know anyone who is envious of others' armpits? For those of us who suffer with HS, jealousy over armpits can be commonplace! Brindley Brooks, founder and executive director of HS Connect, didn't share her debilitating skin condition with many people until electing to undergo surgery for her HS. It was at that point she decided to open up about her condition after 25+ years of silence. It was during this journey and recovery that she met her co-founder, Denise Fixsen. Together they saw the need for a platform for those impacted by HS, including the medical community who treat us. HS Connect, a 501 (c) (3) non-profit, contains all of the information you could ask for including articles, product suggestions, dermatology recommendations, research, open clinical trials, surveys and studies, kids and adolescent section, and mental health resources.
Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness, also referred to as an immune-mediated inflammatory illness and follicular occlusion. It has a huge impact on quality of life physically, mentally, and emotionally. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found (there does not have to be hair growth). It is possible to experience abscesses or lesions anywhere on our body with the exception of the palms of your hands, soles of your feet, and the red part of your lips.
To learn more about HS Connect, visit www.hsconnect.org.
Referrals?
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! Some 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 study.inquiries@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 might be interested!
United States
Head and Neck Cancer patients United States JWW_6793
60-minute web-assisted phone interview, compensation is $100
Non-alcoholic steatohepatitis (NASH) patients and caregivers who speak Spanish and are living in the Chicago (IL) area United States KSCP_6695
120-minute in-person interview, compensation is $200
Pyruvate Kinase Deficiency patients and caregivers United States DYN_6884
60-minute web-assisted phone interview, compensation is $100
Psoriasis, Psoriatic Arthritis, or Ankylosing Spondylitis patients living in Boston, Chicago, San Diego, or Los Angeles United States SCH_6881
60-minute in-person interview in Boston, Chicago, San DIego, or Los Angeles, compensation is $150 + $50 travel incentive
Juvenile Idiopathic Arthritis (JIA) looking for caregivers of adolescents between the ages of 10-17 that have been diagnosed with JIA United States REAC_6876
60-minute in-person interview, compensation is $150 plus possible travel reimbursement (to be discussed if you are selected for the interview).
Adenomyosis or Uterine Prolapse patients United States SHG_6843
45-minute web-assisted phone interview, compensation is $75
IgAN or C3G patients United States HRW_6848
75-minutes (+ optional 10-minute follow-up interview), compensation varies per condition. IgAN compensation is $156 (plus $50 for the completion of the optional follow-up interview), C3G compensation is $188 (plus $50 for the completion of the optional follow-up interview)
Neuromyelitis Optica Spectrum (NMO) or Neuromyelitis Optica Spectrum Disorder (NMOSD) patients United States DYN_6868
20-minute online survey, compensation is $35
Hemophilia B caregivers of adolescents between the ages of 12-17 United States PUT_6851
60-minute web-assisted phone interview, compensation is $100
Chronic Lymphocytic Leukemia patients and caregivers United States SCH_6873
20-minute online survey, compensation is $45
Pancreatic Cancer patients and caregivers United States TIS_6865
60-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $125
Mantle Cell Lymphoma, Follicular Lymphoma, or Diffuse Large B-Cell Lymphoma patients United States HEU_6836
20-minute online survey, compensation is $35
Hemophilia A patients United States INC_6863
10-minute online survey, compensation is $20
Wilson's Disease patients and caregivers United States PUT_6854
60-minute web-assisted phone interview, compensation is $100
Metastatic Breast Cancer patients United States MED_6615 Wave 2
30-minute online survey, compensation is $50
Becker Muscular Dystrophy (BMD) patients and caregivers United States CH_6857
60-minute Zoom interview, compensation is $100
Breast Cancer patients United States SCH_6788
20-minute online survey, compensation is $35
Neuroblastoma caregivers of children United States VCN_6846
60-minute web-assisted phone interview, compensation is $100
Aromatic L-amino Acid Decarboxylase Deficiency (AADC) caregivers United States ZS_6655
60-minute web-assisted phone interview, compensation is $100
HIV patients United States IPS_6766
60-minute web-assisted phone interview, compensation is $98
Sickle Cell Disease (SCD) patients and caregivers United States ZS_6797
60-minute web-assisted phone nterview, compensation is $100
Hemophilia A & B patients United States M3_6688
30-minute online survey, compensation is $50
Ovarian Cancer patients United States SCH_6796
25-minute online survey, compensation is $45
Fatty Oxidation Disorder (FAOD) patients & caregivers United States MI_5480 Wave 2
30-minute online survey, compensation is $50
Dermatomyositis patients United States DYN_6834
15-minute online survey, compensation is $25
Thrombotic Thrombocytopenic Purpura (TTP) patients and caregivers United States JWW_6779
60-minute web-assisted phone interview + 20-minute pre-task, compensation is $150
Pancreatic or Endometrial cancer patients and caregivers United States MED_6807
15-minute online survey, compensation is $25
Rheumatoid Arthritis (RA) patients United States ATH_6685
30-minute web-assisted phone interview, compensation is $50
Non-Small Cell Lung Cancer patients United States CHP_6769
60-minute web-assisted phone interview, compensation is $100
Over Active Bladder (OAB) patients diagnosed with OAB and using “Implanted Sacral Nerve Stimulator” to treat their OAB United States DYN_6770
30-minute web-assisted phone interview, compensation is $50
Phenylketonuria (PKU) patients and caregivers United States SHG_6801
30-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $50 for the interview and $25 for the homework (up to $75 total)
Gaucher Disease patients and caregivers United States BV_6806
60-minute web-assisted phone interview, compensation is $100
Parkinson's Disease or PAH patients United States ATH_6596
60-minute web-assisted phone interview, compensation is $100
Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis, Crohn’s Disease or Ulcerative Colitis patients United States HSP_6799
60-minute web-assisted phone interview, compensation is $100
Ankylosing Spondylitis (AS) - non-Caucasian patients United States MCY_6639
60-minute web-assisted phone interview, compensation is $100
Short Bowel Syndrome (SBS) and/or Stroke adult patients who have started tube feeding within the past 12 months United States WMT_6678
50-minute web-assisted phone interview, compensation is $85
Human Growth Hormone Deficiency caregivers United States GP_6732
75-minute web-assisted phone interview, compensation is $125
Cervical Cancer patients United States GP_6587
60-minute web-assisted phone interview, compensation is $125
Prostate Cancer patients United States GP_6326 Wave 2
25-minute online survey, compensation is $50
HIV patients that are younger than 25 or older than 65 United States KPD_6494
30-minute online survey, compensation is $50
Eosinophilic Esophagitis (EoE), and/or Short Bowel Syndrome (SBS), and/or Allergies patients and caregivers United States CUE_6725
20-minute online survey, compensation is $35
Myopathy patients United States GP_6682
60-minute web-assisted phone interview, compensation is $150
Pancreatic Cancer patients and caregivers United States LAG_6718
60-minute web-assisted phone interview, compensation is $100
End Stage Renal Disease (ESRD) or Chronic Kidney Disease (CKD) patients and caregivers United States HFCS_6701
In-person interviews for those living near Manchester NH, two week long study consisting of approximately 35 hours on site in NH, compensation is $2000 for patients and $1500 for caregivers
Sickle Cell Disease (SCD) - non-Caucasian patients ages 18-25 United States ZS_6707
90-minute web-assisted phone interview, compensation is $150
Hidradenitis Suppurativa (HS) patients United States BPR_6675
30-minute online survey, compensation is $40
Idiopathic Pulmonary Fibrosis (IPF) patients age 50-70 and caregivers of patients age 50-75 United States BEE_6618
60-minute web-assisted phone interview, compensation is $100
Kidney Transplant - at risk for AMR (anti-body mediated rejection) patients United States GP_6555
90-minute web-assisted phone interview, compensation is $150
Colorectal Cancer (Colon Cancer) patients United States MVR_6671
90-minute web-assisted phone interview, compensation is $300
Narcolepsy Type 1 with Cataplexy male patients United States LR_6578
30-minute online survey, compensation is $45
Binge Eating Disorder patients United States HV_6546
30-minute screening call to determine eligibility for yearlong community that pays $100 per hour of participation. Compensation for the screening call is $35
Prostate Cancer patients United States GP_6565
60-minute web-assisted phone interview, compensation is $150
Pulmonary Arterial Hypertension (PAH) patients United States QUAM_6327
60-minute zoom interview, compensation is $100
Urinary Tract Infection (UTI) patients United States PHARV_6554
60-minute web-assisted phone interview, compensation is $100
Breast Cancer patients United States ZS_6522
60-minute online forum, compensation is $100
Non-Small Cell Lung Cancer (NSCLC) patients United States LAG_6511
60-minute webcam interview (plus homework), compensation is $200
Paroxysmal Nocturnal Hemoglobinuria patients & caregivers United States TRI_6197
60-minuteweb-assisted phone interview, compensation is $100
WHIM Syndrome patients & caregivers United States RMR_6517
60-minute web-assisted phone interview, compensation is $100
Psoriasis patients United States GP_6305
30-minute online survey compensation is $50
Multiple Myeloma patients United States GP_6473
90-minute web-assisted phone interview (or two 45 min interviews if the patient prefers), compensation is $210
Burkitt Lymphoma or B-Cell Lymphoma patients United States RP_6484
2-minute online survey no reward
Hemophilia patients & caregivers United States REAC_6423
5-min online survey with no compensation (some participants may be selected for an in-person study)
Thyroid Eye Disease (TED) male patients United States 21G_6335
Year-long study (consists of 4 web-assisted phone interviews), payment upon completion of tasks
Liver Conditions - Autoimmune Hepatitis (AIH), Hepatitis B, Hepatitis C, NASH, NAFLD or Primary Sclerosing Cholangitis (PSC) United States XYZ_6258
150-minute online survey and daily diaries, compensation is $275
Uterine Fibroids patients United States IPS_6179
60-minute web-assisted phone interview, compensation is $100
Amyotrophic Lateral Sclerosis (ALS) patients & caregivers United States PICH_5650
5-10-minute online survey for medical history platform, compensation is $25
Pompe Disease patients United States PICH_5652
5-minuteonline survey for medical history platform, compensation is $20
Vulvar HSIL patients United States RTI_5017
30-minute online survey, compensation is $100
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States PHO_2397
30-minute online survey, compensation is $50
Organ Transplant patients United States AV_5244
60-minute phone interview, compensation is $120
Frequently Asked Questions
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.
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. RPV has paid patients over $9 million dollars since 2013 for participating in research studies.
