The word “marathon” has become so ubiquitous that it is almost cliché. When people hear the word, they think of their favorite reality TV show played for 12 consecutive hours…
Clinical trial facilitators waste so much time that could be spent on research, trying to find patients to participate in their studies. We all know time is valuable, especially in…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…
Guillain-Barre syndrome (GBS) occurs when the body's immune system attacks the peripheral nerves, damaging the myelin insulation. Muscle weakness in the arms and legs are often the first signs of…
Who would think that missing a small amount of genetic information from one chromosome could alter someone’s life, and the life of their loved ones, so dramatically? For many parents,…
Cerebral palsy (CP) is caused by brain lesions that are non-progressive, meaning the lesions don't cause the brain to further deteriorate. It causes impairment of motor function—the ability to control motion…
She was given 15 months if she didn't take action. Heather Von St. James was in the prime of her life. She was the co-owner of a salon/spa where she…
Eryn Gaffney, now 20, was diagnosed with Tourette syndrome at the age of nine. Tourette syndrome occurs as a result of the basal ganglia misfiring. This is the part of…
On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies,…
I recently read an article that was focused on amyotrophic lateral sclerosis (ALS) and how cases of this degenerative motor-neuron disease are expected to increase as the world population ages.…
High school senior, Mary Lacy Lusk has ankylosing spondylitis (AS). For those who might not know, ankylosing spondylitis is a rare autoimmune disorder that is similar to rheumatoid arthritis. Mary states…
Inspiration can be found in almost anything. Frequently, it’s a famous person from history who has overcome adversity to achieve some amazing feat. Sometimes it’s the busy person who finds…
It doesn’t seem possible to have a conversation these days without it devolving into some sort of partisan shouting match will little hope of resolution. Issues that we might think…
I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…
Welcome back to Editor's Choice! May is Lyme Disease Awareness Month, and to bring you awareness we have a 7-minute documentary you won't want to miss! We also have some…
All I can say is: "No $%@#, Sherlock" when I read articles like some of the ones I’ve read recently about the status of hemophilia A and hemophilia B treatments.…
Whenever I couldn’t perform to the best of my ability or follow through with a project, I would typically come down very hard on myself. One thing I am trying…
There is no way to prepare yourself to hear that your child has an incurable rare disease. After the initial shock of learning that their child will most likely die…
Bethany Barber is a Virginia native living with sickle cell anemia who has dreams of making it big as a model. She goes on daily castings, as modeling is her main…
Some people can manage tuberous sclerosis complex (TSC) with their doctors for years using a watch-and-wait approach until the last and best option—surgery—becomes necessity. By using the watch-and-wait method, a…
Every year, actually every day, the FDA and similar organizations for other countries approve new medicines. Innumerable pharmaceutical companies work tirelessly for years to research, develop, test, distribute, and market…
Carl Rooney has seen everything SMA Support UK has done for his younger brother, Daniel. That's why he's running 2,107 miles. Carl is from an English town called St. Ives, and…
I was discussing with my sister’s husband a presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s (PwP),…
At the Myasthenia Gravis Foundation of America’s annual conference this year, Kathryn Rodriguez (pictured above with her husband Alexis) led some incredible breakout sessions for the caregivers/loved ones of those…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
