At the outset let me say that we don’t often do this. However…
I believe that what follows is a bona fide way, perhaps an important way, to be heard and to possibly help the world.
A bit of background – Over the years since my stroke, now 25 years ago, I have been a champion of participating in clinical research. Clinical research is the process of creating new medicines or rehabilitation techniques, among others.
I have personally been a participant in many studies. My first experience was at the Brain Rehabilitation Research Center in Gainesville, Florida, which is a joint venture of the US Veterans Administration and the University of Florida Medical School. There I spent much of a summer participating in various studies including the testing of Constraint Therapy and Locomotion Equipment. Since I was up in Gainesville anyway that summer, I also assisted PHD students as they tried to find new ways to treat brain disorders. That summer was a very rewarding experience for me, where for one important thing – I learned to hold a wine glass in my partly disabled right hand. And believe me -that is important in Florida!!
That said, when a Corporation, Foundation or an Academic Institution start a medical research process to create innovation, to my mind, there is the medicine and the marketing. Obviously, one must create something useful, and then it must be sold.
Rare Patient Voice
That brings me to Rare Patient Voice who is hired by those entities who are creating innovation. I have become familiar with their team, and in fact, participated in one of their studies.
Their vision is to include the patient voice in research, and ultimately, improve the lives of patients everywhere. They help patients and caregivers voice their opinions through surveys and interviews to improve medical products and services.
Now accepting ALL Countries!
The healthcare community has finally realized the REAL EXPERTS are the Patients and Caregivers. Better products, services, and treatments, start with Better Research. They need YOUR input and are willing to pay $100 an hour for it.
The way it works is that you first sign up with them on the link below. Rare Patient will contact you and you will be asked to complete a profile which allows them to categorize you to offer you appropriate studies to possibly be included in.
Sign up at the link below!
https://rarepatientvoice.com/strokerf/
I hope you participate and make YOUR VOICE heard
Bob Mandell
Founder and Managing Director
BobM@strokerf.org
