You wouldn't know by looking at 5-year-old Grayson Ledbetter that he only had a few years of life left to live. According to The Washington Post, Grayson battles the rare,…
Erin Gard and her mother, Joanne Guthrie-Gard, already spent many years of their lives searching for an effective epilepsy medication for Erin. However, once they found it, they lost access…
According to the New York Post, 16-year-old Brandon Marshall from the UK stands tall at a whopping 7' 4", possibly making him the tallest teen currently in the world. His…
When Mac Grieb was just a one-year-old he already had two open heart surgeries and doctors said that he would need another in his teenage years, reports The Inquirer. Last…
According to a story from People, parents Lester and Noreen Jessop from Utah recently discovered that all three of their children have a rare, life-threatening disease called pantothenate kinase-associated neurodegeneration. Their firstborn…
According to a story from aninews.in, mother Shashi Mishra and her daughter Anamika Mishra have staged a hunger strike in a desperate move to receive treatment for their muscular dystrophy.…
According to a story from the Herald Sun, Matilda Mahon, an eighteen month old girl from Australia, will need to travel to the United States in order to receive treatment…
26-year-old Rebecca Smith's pregnancy was going as smooth as can be until she was 8-months pregnant, reported Hertfordshire Mercury. Rebecca discovered a lump on her neck and went in for…
Losing a child has to be one of the most heart-wrenching experiences a family can encounter, yet losing a child when it could have been prevented is even more devastating.…
According to BelfastLive, Darren and Danielle Gibson, the parents of little six-year-old Sophia battling Dravet syndrome, traveled out of the country in search of the care she needs. For the…
According to a story from Central Texas News Now, a four-year-old girl with an extremely rare form of mitochondrial disease got her wish to see snow. The girl, Scarlett Landry,…
It began as a mysterious pain. Chief Master Sergeant Chad Caden experienced years of discomfort as a result of osteonecrosis in his right foot. Beyond pain, it also created uncertainty.…
According to a story from 13abc.com, a family is working to spread awareness about Batten disease after second grader, Charles Klein was diagnosed with the condition. The disease has no…
Shannon Hudson, mother from Columbus, is doing everything in her power to bring awareness to Glutaric Aciduria/Acidemia type 1, a rare disease her daughter was diagnosed with upon birth,…
According to a story from The Independent, Britain's disability welfare program is coming under fire for its Personal Independent Payment (PIP) assessments. Statistical measures suggest that these assessments are taking…
Ben Mudge might closely resemble Chris Hemsworth's Thor with his good looks and shredded physique, but he's also a real life superhero to many, reports Business Insider. Ben has defied…
When dealing with a rare disease, it's often hard to find someone else who's experiencing the same situation. Someone to talk with, cope with, listen to. Someone who gets it.…
According to a story from wired.com, Stephen Hawking, one of the most famous physicists on the planet, passed away on Wednesday, March 14th, 2018. He was 76 years old. His…
Forty-eight-year-old Isabel lives with the genital skin condition called lichen sclerosus, being diagnosed post menopause, and it's not an easy new life-style, reported NetDoctor. Lichen sclerosus is a rare genital…
Rare disease patients remain one of the most underserved medical populations, and they often have to deal with debilitating symptoms or complications that can make daily life difficult. For example,…
According to a story from macleans.ca, after beginning to develop problems with mobility such as climbing stairs, Julie Mason of Montreal endured years of confusing tests before doctors were able…
Just yesterday, the incredibly successful actor Irrfan Khan, announced on twitter that he just found out he has a rare disease, reported The Guardian. Khan has appeared in over 100…
Macey Brietenback continues to defy all odds. Originally reported by CBS Baltimore, the teenager lives with a condition that prevents her from digesting food. Even though it has given her…
According to a story from the Canberra Times, Dan Gaffney, resident of the Blue Mountains in Australia, was denied access to a treatment that was helping to extend his life…
This year has brought an especially nasty and dangerous strain of the flu. Nobody wants the flu, but contracting the virus while suffering from an underlying condition can be more…
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