Hogan Teem was a healthy seventeen year old. He had a girlfriend and he spent his summers mowing lawns in his North Carolina hometown. Hogan played football, baseball, and…
As originally reported in NBC News, Mitchel Herndon was witty, sporty, and very close with his siblings. At 19, he began to study as a freshman political science and theology…
According to a story from milanmirrorexchange.com, Lincoln Hopper, who will be turning two years old soon, was recently admitted to the hospital after showing indicators of heart failure. This is…
According to a story from Cape Town Etc, two girls in South Africa were living with the same rare disease: primary immunodeficiency (PI), a group of rare conditions in which…
According to a story from Kent Online, like many other four year olds around the world, Olivia Wilkes will start attending school this year. However, her situation is different from…
That’s right- HOBSCOTCH NOT hopscotch, and you don’t need a sidewalk and chalk to play it. The Epilepsy Foundation of Virginia (EFVA) has been looking out for you, and applied…
According to a story from Express Digest, young mom Emily Nixon, age 25, was heartbroken when her oldest daughter Darcy Roger, age 6, passed away only five days after her…
Little Rozárka’s mother isn’t giving up. Her daughter is the only person in the Czech Republic with tetrasomy X, and is one of 50 people in the world with the…
As originally reported in Nottinghamshire Live, oculocutaneous albinism is a rare inherited disease thats recognizable to some; many know it for causing pale features, white hair, and light eyes. It…
When Frankie Avila first got his lung transplant, he was told that, like most organs that are transplanted, his lungs only have a certain amount of time before they…
According to a story from the Borehamwood & Elstree Times, the family of 11 year old girl Sivan Hermon is plagued by a rare disease: primary pulmonary hypertension. As the…
According to a story from irishmirror.ie, Danny O'Donoghue, the vocalist and keyboard player for the Irish rock band The Script, recently talked publicly about his struggle with Wilson's disease, a…
According to a story from patch.com, the life of Jasmine Matthews has been defined by the sport of basketball. "Jazz" first gained fame for her skills on the court when…
Teresa Scruton is not a physican nor a nutritionist but she has been a person with hereditary angioedema (HAE) as well as a researcher for many years. Below she shares…
According to a story from peoplemagazine.co.za, Kasandra van Alphen is an eight year old girl from Johannesburg, South Africa that was diagnosed with primary immunodeficiency. Known by her friends and…
Meet Shane Burcaw and Hannah Aylward. Shane has spinal muscular atrophy (SMA). Hannah doesn't. And their message is: That doesn't get in the way of being together. So they've taken to…
According to a story from NBC News, Mitchell Herndon, a 19 year old from Missouri, recently passed away due to the progression of a rare genetic disease that is so…
Bohuslav Skoupý had trouble with his kidneys. He even had a transplant. He also had heart problems. In the end, it turned out actually by chance that Fabry disease was…
As originally reported in WWVA, West Virginian Sib Weatherford spent one afternoon this fall doing what nobody though possible: he slid 400 feet down the New River Gorge's high-line in…
As originally reported in SF Gate, Jeannette and Victor Vega quickly realized that taking care of their second daughter, Tiana, was not going to be so easy this time. From…
Sarah experienced her first symptoms at age eight. She suffered frequent and long migraines, despite being so young. Doctors were concerned she may have meningitis but never got to the…
According to a story from Technology Review, the story of Mila Makovec shows the potential impact that personalized medicine could have on patients while also revealing some of its limitations.…
Jessica Walton described the staff at Queen Elizabeth Hospital in King’s Lynn as being in “a bit of a panic” when they thought that she was having a stroke.…
According to a story from the TGen Blog, a simple typing mistake lead to a diagnosis for a boy with an incredibly rare genetic disorder. In fact, this disorder is…
According to a story from the Cystic Fibrosis Foundation's Community Blog, the internet allows for access to a trove of knowledge and information literally at your fingertips. This has naturally…
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