NBCNews Chief Foreign Correspondent, Richard Engel, opened up about one of the hardest phone calls he ever had to receive-- the call where he received the diagnosis of Rett syndrome for…
Chloe Fernandez is an 11-year-old with primary ciliary dyskinesia, and that hasn't stopped her from being an advocate for the disease, reports Los Angeles Times. When given several amazing opportunities…
In an episode CNN's webseries LoveStory, titled Love Accessibly - we follow Kristen as she looks for love in New York City as a woman in a wheelchair. With her…
"Ok, well first of all...I know nothing. But if your kids are anything like me, they're going to break a lot of toilets!" Those are the starting words writer and…
Emma and Tripp Mattingly share the same infectious personalities of energy and happiness, but they also share the same rare genetic disease known as LPIN1, reports The Lebanon Enterprise. Living…
There aren't many families like the Bradley's-- not just because they face the loss of their 10-year-old son who passed away recently due to brain cancer, but because of their…
In her recent story with Huffington Post, Allison Landa describes her experiences with congenital adrenal hyperplasia. Her article, self-titled as “My Life as a Former Bearded Lady,” details a lifetime…
Earlier this year, Patient Worthy featured Ashley and her non-profit Love Not Lost – an organization that provides portrait sessions and photo albums for families dealing with a terminal illness…
When someone is diagnosed with a rare disease, or one that has no cure, it is not uncommon for the person to begin to have mental health challenges as well.…
According to a story from SWNS, a grandmother who had survived a battle with ovarian cancer came face to face with the doctor responsible for developing the treatment that saved…
At first, 14-year-old Alec Hebblethwaite and his family thought he kept choking on his food due to eating too quickly or talking mid-bite, yet, after some time they learned he…
According to an article from The Daily Herald, "The Big Sick" was Kumail Nanjiani's first feature film. Released in 2017, the movie received widespread praise from critics. The story was…
According to a story from the Washington Post, Vanellope Hope Wilkins had to immediately be placed in sterile plastic when she was born. This was because her heart, while functional,…
Michael Mauti, a linebacker for the New Orleans Saints, had been struggling with ulcerative colitis for years, and it was getting worse. The thought of eating become one of great…
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
A 23-year-old NBC news anchor received the words that everyone fears, "you have cancer". Boston Globe Media Partners reported the experience that young Natasha Verma faced upon her diagnosis. While it's…
It wasn't the Christmas 18-year-old Alex Leisenring and his family were expecting this year. While they received the white Christmas they had hoped for, they spent the holiday in a…
It all started with extreme allergic reactions around her mouth when eating certain fruits, then overtime she grew to become allergic to just about everything, even her own tears and…
According to a story from People.com, Gretchen Witt began selling cookies in order to raise money for cancer research after it seemed like her son Liam's battles with stage IV…
According to a story from Daily Echo, a theatre school principal is arranging a special performance in order to celebrate her survival of thyroid cancer at only thirty years old.…
Gene therapy is on the rise, and it just might be exactly what many children suffering from genetic disorders need to save their lives. Today reported that an amazing organization…
Doctors of semi-professional soccer player, Matt Dimbylow, believes he developed Parkinson's disease at the young age of 36-years-old due to a head injury he sustained playing the sport, reports Mirror.…
When Kristen Smedley learned her son, Michael, was diagnosed with retinitis pigmentosa, she decided she wouldn't sit back and watch it take away from her son's life, she would take…
The death of a loved one is never easy. It is difficult both to experience and to understand. Mark and Julie Russel lost their son Harry to mitochondrial disease when…
Rett syndrome might limit 8-year-old Laurel Cooper's ability to speak and do every day tasks, but it doesn't hold back her spunky, sassy attitude, reports University of Wisconsin-Madison News. She will…
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