Charlie Fry is a three-year-old from Kansas City living with SLC6A1. His family is very active in the SLC6A1 community, even starting a nonprofit titled "A Cure for Charlie." They…
Tara Johnston, a resident of London, England is now twenty years old but still coping with severe acne. Tara interviewed with MyLondon in an effort to raise awareness and share…
Mitochondrial Disease Mitochondrial disease is a rare and progressive condition that currently does not have a cure. The mitochondria is responsible for providing energy to the body. This energy is used…
According to a story from wndu.com, a fundraiser that was held in Berrien Springs, Michigan, is helping to raise money for Carter Sheline, who recently graduated from high school and…
As reported in WTNH; in Stafford Springs, CN, the Pokorny family was rudely awakened to the world of rare diseases when their new daughter Olivia was born with spinal muscular…
Landon Groves was diagnosed with Kabuki syndrome, a rare multisystem disorder, and leukemia soon after his birth. Because of these conditions, his family faces hefty medical bills. His community has…
Hayden Grosvenor is used to spending time in the hospital. He has Langerhans cell histiocytosis (LCH), a rare condition that is characterized by an excess of white blood cells. Because…
Grant Bonebrake was diagnosed with Alport syndrome at age 12. Since then, he has gone on to advocate for not only Alport syndrome patients, but the rare disease community as…
Monica and Josh Poynter have recently adopted a nine-year-old boy, Trey, from China. They felt a connection to the boy as he has hemophilia type A, the same rare bleeding…
12-year-old Aidan Carter has Hunter syndrome, also known as mucopolysaccharidosis type II (MPS II), a rare, progressive condition that impacts mental development, appearance, physical abilities, and organ function. In order…
The COVID-19 pandemic has been difficult for everyone; we've all had to make changes to our lives because of it. Some of us have had to make bigger changes than…
Spinal Muscular Atrophy Spinal muscular atrophy (SMA) is a rare disease that causes progressive muscle loss and resultant muscle weakness. It is caused by a lack of motor neurons. It…
Stanford University Geneticist Ronald Davis faced one of the most challenging research projects of his career. According to a recent article in The Scientist, ten years ago Whitney, his son,…
As the pandemic has raged on, we have learned more and more about what side effects can occur from severe COVID-19 infection. Some of these are common in patients with…
Yash Cary knows what it's like to spend the holidays in the hospital. In fact, three of his last six Christmases have been at UNC Hospital. This is because Yash…
"Once Upon a Christmas Miracle" is a Hallmark movie, falling into their "Movies and Mysteries" holiday series. It tells the true story of Heather Krueger and Chris Dempsey, a couple…
Selma Santos has met many nurses over the course of her life. Having a daughter with cystic fibrosis means spending a lot of time in the hospital or at doctor's…
Suzanna DePaolis views her life with a rare disease as a battle, one that she is conquering. This battle began fourteen years ago when she was diagnosed with eosinophilic granulomatosis…
Crystal Goodwin, from South Portland, Maine, was diagnosed with mast cell activation syndrome (MCAS) back in 2011. A rare disease diagnosis can turn one's life upside down, and Crystal is…
Rare disease patients often face a long, complicated, and frustrating journey to the right diagnosis and treatment. Ally Trainor, a 21-year-old student at George Mason, is no exception. She has…
When Camden Rau was born, his parents immediately knew that he was facing some sort of health problem. According to Camden's father, Steven, who spoke to Wink News, Camden's skull…
According to a story from spectrumnews1.com, three year old Israel Bombela has endured many health challenges in his short life so far. The youngster went through a bout of COVID-19…
Adam Settle, is an artist, football lover, and the youngest of eight. He’s also the subject of the new book, No Day Wasted: The Adam Settle Story, by Susan F. Stallings.…
Xavier Alford told BBC News how he vividly recalls the day, twelve years ago, when he was told by his doctor that he had a very rare disease. His doctor…
WCVB NewsCenter 5 recently published a news item featuring Nancy and Paul Burke and their three daughters. The Burke family has been living in the shadows of the deadly Sanfilippo…
© Copyright 2024 Patient Worthy
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.
