5-year-old Gia Danninger was diagnosed with aplastic anemia last year. Ever since, it's been a constant battle for her life, but Gia fights with courage. This rare blood disorder causes…
After dueling with a fatal rare disease, Makenna Vanzant, will be making her epic return to the basketball court. The high school sophomore has been battling hemolytic uremic syndrome and…
Jay and Amy Granzow are among the many worried parents fearing the GOP tax plan, because of the threat it brings to orphan drug research. The Manhattan Beach couple fear…
Robbie Edwards has a rare disease, one so rare that she's one of only 17 people in the world with it. She suffers from hereditary spastic paraplegia which represents a…
Allison and Ben Gauvin have been to hell and back, but they manage to keep their spirits up. The couple from Connecticut lost their two children to a rare mitochondrial…
Xander Williamson is among 600 people in the world, and merely 11 people in Australia, to have Pitt-Hopkins syndrome. His mother Melissa had no idea she would be returning from…
A Saudi medical team was able to surgically remove 20 kilograms (44 pounds) of weight from a young girl with a rare disease. Five-year-old Safia, who suffers from Prader-Willi Syndrome…
A small town Australian mayor was caught parking in a designated handicapped spot, and the mother of a rare disease girl is not having it. The event took place at…
Because of an extremely rare disease, 3-year-old Reshmi's head has doubled its size after a fluid buildup in her brain. Reshmi Marak lives in a poor village in Tripura, north…
A new Brazilian study indicates that Zika is hitting especially hard for lower-income groups, with infection rates exceeding 60%. Zika is, of course, the virus that spread rampantly a few…
Back in 2014, the FDA gave the green light for eight brand new drugs for orphan diseases. Among the pack was BioMarin Pharmaceutical's very own VimiZim. Weird name right? Well,…
Bradley Lowery won the hearts of many as a football mascot. After an ongoing battle with neuroblastoma, he lost his life earlier this year. Neuroblastoma is a rare form of…
Global Genes is one of the world's most prominent rare disease advocacy groups and early next year, they will host the second annual RARE in the SQUARE event. At this…
Brielle Manning has been fighting through seizures for over a year, but the dust has settled and her family is now seeing some relief. Brielle suffers from an incredibly rare…
A teen suffering from a rare disease is receiving some holiday love from kind strangers. When Nathan Kelley started losing his hearing, he knew something was wrong. At first, him…
When Raeno Brendtro was asked to sit down after her diagnosis, she refused. She needed to stand for as long as she could, now that her time was limited. The…
Six weeks after their daughter was born, a young New Zealand couple had their two children taken away by the state (one was a newborn baby) because of what state…
The close knit Algiers community in New Orleans united together once again for a charity walk to raise awareness and money for Stevens-Johnson Syndrome (SJS). SJS is a highly rare…
4-year-old Dimi loves to hang out with other preschoolers his age, play in the park, and ride his bike like a regular kid, but his mother Frances is fearing his…
The highly anticipated Season 2 of "The Crown" hit Netflix today and with it, a new chapter of political intrigue, elegant royalty and... a drug addicted JFK? Say what? It's…
Tayla Udall from Essex, England, is used to finding her four-year-old son rummaging through leftovers in the kitchen because of his rare disease of perpetual hunger. Frankie suffers from Prader-Willi…
Lilia Zaharieva was a University of Victoria student in her early late twenties when she found herself losing half her leg function due to cystic fibrosis. Walking from class to…
Sophie Walsh is in need of help. She was diagnosed with the rarest of the rare forms of cancer. She was only two years old when her mom, Sandra, and…
In 1994, Deanna Babiuk-Black began to feel sick very frequently. Her typical care-free personality was being challenged with illness and her personal words to live by "take a negative and…
Chocolate, chips, steak. These are a few of our favorite things, but for Dublin brothers Mark and Peter Lavery, they are forbidden It doesn't stop there. Cheese, eggs, beans and…
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