It takes courage to suspect that there is something wrong and doctors are misdiagnosing your symptoms. It takes courage to keep going back and politely but firmly asks for more…
Many rare disease patients face difficulty when it comes to diagnosis. In fact, it takes an average of five to seven years for them to finally receive the correct diagnosis.…
When I sat down with 38-year-old Adam Kemble for our interview, there was one point that he really drove home: “You have the opportunity to choose what you let define…
Caroline is the adorable three-year-old daughter of Kevin and Kelly Brennan Culver, and she was diagnosed with juvenile dermatomyositis (JDM) about a year ago. This means that she requires an…
Tanner McLeod has been searching for a stem cell donor for a long time. He was diagnosed with sideroblastic anemia at just six months old and has required a transplant…
George Mendoza has inspired others throughout his whole life. He has been an athlete, an author, a motivational speaker, and more. Born in 1955 in New York City, Mendoza has…
A person’s true feelings are often difficult to express during an interview. When asked a question by the interviewer there is no time to rehearse but only grasp at the…
Altogether, there are over 7,000 rare diseases. Worldwide, 1 in 20 people live with a rare disease. But the journey to diagnosis can sometimes be confusing or difficult. So when…
Living with a rare disease can be difficult and scary for some, especially during a global pandemic that has affected millions. This Nottingham father knows these feelings firsthand; he lives…
Being diagnosed with a rare disease can bring on various emotions; everybody's experience is unique to them. Some feel relieved to finally put a name to their symptoms; others are…
Parker Boyer and his family know many of the obstacles that rare disease patients face; they've encountered many of them since Parker's birth. In fact, they dealt with a number…
According to a recent article featured in News5Cleveland.com, there are over seven thousand rare diseases worldwide that affect over thirty million people in the United States. Several days ago, patients…
Like many other residents of West Hollywood, Mark Chaney uses public transportation, specifically the bus. Twice a day, Monday through Friday, Mark boards the bus at his local stop. He…
Monty Hui, an eight-year-old boy from Australia, and his family have spoken to SBS News about living with a rare disease and the obstacles faced in diagnosis and recognition. He…
According to a story from azfamily.com, Reyna Felix, age 28, was at work as a 911 dispatcher when her coworkers said that she started behaving strangely. Around midnight, she fell…
Michael Conway, a grandfather from Scotland, believes that there should be increased rare disease screening after he was diagnosed with adrenoleukodystrophy (ALD) in 2016. Like many other rare disease patients,…
According to a story from ktvl.com, seven year old Emma Suetta, of Etna, California lives with a rare disease called cystinosis, and she is doing her part to help find…
According to a story from The Whitewater Company, parents Paul & Heather Lynn were at a loss for what to do when their daughter Clarity was born with the rare…
Jason Kraft, the owner of Electric Bike Technologies, has brightened the lives of two sisters with two electronic tricycles that are typically made for senior citizens. Maggie and Charlie Monnin,…
11-year-old Oliver Shultz is recovering at home after two weeks of stress and fear. It began with an ache in his back, followed by a fever. Soon, the family was…
Aibe Shreve is only four years old, and he has already overcome so many obstacles in his short life. The little boy from Ohio Valley was born with two holes…
Elloise Charles has set out on a mission to raise awareness and money for progressive supranuclear palsy (PSP) after her father was diagnosed. His journey to diagnosis was similar to…
On her 23rd birthday, Sara Lefebvre almost died. After having some drinks with friends, her friend drove Sara home. But Sara didn't make it inside; she collapsed in sub-zero temperatures,…
Victoria and Zack Rasberry are asking for a miracle to save their youngest child, Ollie. Ollie and his older sister, Addy, both have metachromatic leukodystrophy (MLD), a rare disorder that…
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…
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