Here’s your chance to make your voice heard on your health Issues.
We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.
1. 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
2. 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
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Crohnâs Disease, Diabetes, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis caregivers of children in Philadelphia, PAÂ United States
75-minute in-person interviews, compensation is $225
Crohn’s Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Crohnâs Disease, Ulcerative Colitis patients United States
15-minute online survey, compensation is $30
Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Prader-Willi Syndrome (PWS), Small for Gestational Age (SGA), Turner Syndrome patients or caregivers in Boston, Charlotte, Raleigh, and Orlando United States
3-hour in-person interview
Migraine patients United States
Online surveys over a 6-10 week period, compensation is $325 to $585
Osteoporosis/Osteopenia patients who currently use or have used Forteo United States
60-minute in-person interview, compensation is $180
United Kingdom
Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP
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 patientsâ lives.How will I be paid?
You will earn $120 per hour for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.
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 and family caregivers over $13 million dollars since 2013 for participating in research studies.
WHERE: The Johns Hopkins Hospital Chevy Chase Conference Center, Zayed Tower 1800 Orleans St. Baltimore MD 21287.
The annual Pituitary Patient Education Day is a free event that features presentations from Johns Hopkins pituitary experts.
To RSVP, please email pituitaryday@jhmi.edu. Space is limited. Each person can bring up to one guest. If you RSVP yes but you cannot make it, please inform us as soon as possible by email, so that the slot can be offered to someone else.
List of presentations will be posted when finalized. Topics covered last year include:
How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL
I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006. Â I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006. Â My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.
I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.
An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards).  Someone had brought a UFC jug and decorated her and had her pose around the ship.
The beginning text reads:
Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!
Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.
On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?
Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August 2006. Â I convinced everyone that I was well enough to go off-road in a pink jeep, Â DH wanted to report me to my surgeon but I survived without too much pain and posed for the header image.
In 2009, I figured I had âextra yearsâ since I survived cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldnât go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.
Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.
We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldnât get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didnât have cave pictures or T-Shirts. What a missed opportunity!
This was so cool, so much fun. I thought I might be afraid at first but I wasnât. I just followed instructions and went.
Sometimes they told us to brake. We did that with the right hand, which was always on the upper cable.
After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldnât figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.
After that, no more problems with braking!
The next platform was very high â over 70 feet in the air â and the climb up was difficult. It was very hot and the rocks were very uneven. I donât know that I would have gotten to the next platform if Michael hadnât cheered me on all the way.
We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.
But, I did it! No fear, just fun.
Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.
The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. Â This is the first one:
Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.
This is the first podcast I have listened to. How wonderful to hear your voices! Thank you Mary for sharing your story and for Robin for being the perfect host. This is a wonderful way of hearing about many of our journies with this awful disease – just brilliant!
Great topic……more awareness is needed as I’m convinced this is under-diagnoised vs. uncommon!!
The information age and innovative thinking meets new medical needs
Great show. informative and potentially life saving
Please join us for a Virtual Town Hall Meeting on Cushing’s Awareness Day!
Mark your calendars for Monday, April 8, 2024, from 7 – 8 pm EST as we shed light on Cushing’s syndrome with two incredible people who are living with this condition.
Gain valuable insights, hear personal stories, and learn more about Cushing’s syndrome from those who understand it firsthand.
Salk Distinguished Professor Emeritus Roger Guillemin, recipient of the 1977 Nobel Prize in Physiology or Medicine and neuroendocrinology pioneer, died on February 21, 2024, in Del Mar, California at the age of 100.
Roger Guillemin Click here for a high-resolution image.
Credit: Salk Institute
âWe are incredibly saddened to learn of Rogerâs passing,â says Salk President Gerald Joyce. âHe leaves a remarkable legacy at Salk and around the world. His brilliance, commitment, and passion for discovery brought forth some of the last centuryâs most significant advances in our knowledge of the human brain. He was a cherished colleague and mentor to many. I personally mourn his loss and know I speak for the entire Salk community when I say our world is less bright without him in it.â
Guillemin joined Salk in 1970 to head the newly established Laboratories for Neuroendocrinology. He and his group discovered somatostatin, which regulates the activities of the pituitary gland and the pancreas. Somatostatin is used clinically to treat pituitary tumors. He was among the first people to isolate endorphins, brain molecules that act as natural opiates, and his work with cellular growth factors (FGFs) led to the recognition of multiple physiological functions and developmental mechanisms.
Guillemin played a key role in discovering the brainâs role in regulating hormones, substances that act as chemical messengers between different parts of the body and regulate bodily functions. While scientists had long believed that the brain ultimately controlled the function of hormone-producing endocrine glands, there had been scant evidence to prove exactly how it did so.
After meticulous study of materials harvested from 1.5 million sheep brains, Guillemin and his team made a breakthrough. They discovered releasing hormones, produced in small quantities in the hypothalamus of the brain. These are delivered to the adjacent pituitary gland, which in turn is triggered to release its own hormones that are dispersed through the body. Guillemin and Andrew Schally separately extracted a sufficient amount of one releasing hormone to determine its structure in 1969. They subsequently were able to produce it with chemical methods.
Their work would lead them to the 1977 Nobel Prize in Physiology or Medicine, shared also with Rosalyn Yalow for a separate but related discovery, for âdiscoveries concerning the peptide hormone production of the brain.â
This breakthrough resulted in the identification of a molecule called TRH (thyrotropin-releasing hormone), which ultimately controls all the functions of the thyroid gland. In the following years, he and his colleagues isolated other molecules from the hypothalamus that control all functions of the pituitary glandâfor instance, GnRH (gonadotropin-releasing hormone), a hypothalamic hormone that causes the pituitary to release gonadotropins, which in turn trigger the release of hormones from the testicles or ovaries. This discovery led to advancements in the medical treatment of infertility and is also used to treat prostate cancer.
Guillemin was born in Dijon, the capital of Franceâs Burgundy region, on January 11, 1924. He entered medical school at the UniversitĂŠ de Bourgogne in 1943, receiving his MD from the FacultĂŠ de MĂŠdecine in Lyon (then under the same academic administration as his university in Dijon) in 1949. Although he enjoyed learning about medicine and would practice it for several years before committing to research full-time, much of Guilleminâs youth and college experience was wrought with challengesânot the least of which was the German occupation of France. âDark years of no fun these were,â he wrote.
Earning his Doctor in Medicine required the composition and defense of a dissertation, something that Guillemin looked forward to doing. âI had always been interested in endocrinology,â said Guillemin. â[An MD thesis] was usually pro forma. I decided, however, to write a dissertation⌠that I would enjoy, hopefully on some work I could perform in a laboratory.â A challenge to his desire to conduct research was a dearth of lab access. âThere was no laboratory facility of any sort in Dijon, except for gross anatomy.â
In a fortuitous turn of events, Hans Selye was lecturing in Paris. Selye was a fellow pioneer of endocrinology, and an eager Guillemin made the journey to hear him speak. âA few months later,â Guillemin said, âI was in Selyeâs newly created Institute of Experimental Medicine and Surgery at the UniversitĂŠ de MontrĂŠal.â Guillemin would go on to earn his PhD in physiology, with a special focus on experimental endocrinology, from the university in 1953.
Shortly after completing his PhD, Guillemin became an assistant professor of physiology at the University of Baylor College of Medicine. Once there, he began to pursue the identity of the chemical mediators of hypothalamic origin, which were primary suspects for controlling pituitary function in the brain.
Guillemin was a mentor to many future leaders in endocrinology and medical research while at Baylor, including Catherine and Jean Rivier and Wylie Vale, who would all follow Guillemin to Salk in 1970 and themselves become professors there.
In addition to the 1977 Nobel Prize, Guillemin was the recipient of numerous accolades for his work. These included the Gairdner International Award, the Dickson Prize, the Passano Award, the Lasker Award, and the Presidentâs National Medal of Science, presented to him by then-President Jimmy Carter. He was also an elected member of the National Academy of Sciences (1974) and the American Academy of Arts and Sciences (1976). Guilleminâs native France recognized his contributions to science and health by naming him a Commander in the Legion of Honour, the countryâs highest order of merit. He served as the Salk Institutesâs interim president from October 2007 to February 2009.
For all of his accomplishments, Guillemin was always quick to point out the contributions of the many people who worked alongside him. âI have had the extraordinary privilege to work with wonderful collaborators, some so much more knowledgeable in their own field than I was (or still am), all full of enthusiasm and sharing the common ethics of science,â he wrote as he reflected on achieving the Nobel Prize.
When asked in a September 2017 interview with the La Jolla Light what his philosophy in life was, Guillemin responded, âHelp people. I really wanted to be a physician⌠[and] I knew all my efforts would be to help people.â
Up until his last few years of life, Guillemin was an active member of the La Jolla, California community and was an avid collector of French and American paintings and sculptures, as well as Papuan and pre-Columbian pottery.
Guillemin is survived by his five daughters, one son, four grandchildren, and two great-grandchildren. He was pre-deceased by his wife, Lucienne, a talented musician, who died at the age of 100 in 2021, after the couple was married for 69 years. Guillemin died on her birthday.