About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…
Two years ago, Lucas wouldn't go anywhere near water. Last month, he tackled a swimming challenge, and he did so in support of a cause that's close to home. Lucas…
One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…
Sometimes, the path to diagnosis takes many twists and turns. This is true for people who have Primary Biliary Cholangitis (PBC), according to Gail from the PBC Society of Canada. In this video, she…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
Andrew Graham was diagnosed in 2009 with a rare autoimmune condition called ankylosing spondylitis, or AS. This disorder primarily affects the bones in his back and causes his vertebrae to, over…
Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Imagine watching movies with friends, not knowing that you have narcolepsy and struggling to stay awake. Your eyes keep rolling and you keep fighting to stay awake. Yet you cannot.…
Peter and his wife Ashleigh call their son Riley their “little fighter.”This is his nickname because he made it to his first birthday, which was well beyond what doctors told…
Growing up, the young boy would always hear jets roaring over his neighborhood. This sparked his dream, his passion. Anthony Lickteig-Carter always hoped to become a pilot. Nevertheless, because of his condition,…
Stephen Mitchell was losing his fight with IPF about five years ago. He began running because he did not want to die of a lung disease, like his father. Although…
May 15th is TSC Global Awareness Day! Tuberous Sclerosis Complex (TSC) is defined as an inherited disorder that causes tumors to develop in vital organs. One million people worldwide are…
When you think of a physical therapist, you typically think of a person that will help with treating injuries. Or you think of them a movement specialists. Surprisingly, physical therapists…
Mark your calendars because World Parkinson's Day is here!! Winter is (mostly) over and spring is hot (emphasis on hot) on it's heels! And, of course, April showers means we're…
One of the first things many people do after being diagnosed with a rare disease is search online to find out more about it. I know that is exactly what…
What is the perfect way to spend a Saturday? Well, if you are a fishing enthusiast and enjoy raising money for a cause I have the perfect event for you.…
Jamie has been living with Tourette syndrome, so bad that she was not able to perform many of her daily activities. She would often avoid going to places outside of her…
The Sjogren's Syndrome Foundation wants to spread awareness on this condition. The Foundation, alongside its members and volunteers, wants to use its platform to educate people about the Sjogren's syndrome.…
The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…
The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…
An Australian couple shares their story of finding out that their daughter Aviana, has spinal muscular atrophy (SMA). SMA is a rare genetic disease, which effects the nerves that control…
It was an ordinary day for 8th grade student Landon Severson. He was just starting the new school year and went to marching band practice. However, his day changed when…
Fact: Tourette syndrome (TS) is recognized as a neurological condition that affects the brain and nervous system. About 1 out of 100 people are affected by this condition that's frequently…
Canadian, Barb Charboneau, felt something was wrong with her around the age of 11. Years later, she was diagnosed with Tourette syndrome. Then it took many more years for her…
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.
