It was a classic story of boy-on-dialysis-waiting-for-a-kidney-transplant meets girl. The year was 1997. Larry Wetsch's kidneys were in dire state, hardening due to a rare disease called glomerulonephritis. Glomerulonephritis happens when…
Imagine waking up one morning feeling pain shoot all over your body. It seems like it's out of nowhere. When you try to move your neck, it will barely budge.…
Canavan disease is an isolating condition. It's a rare disorder caused by a genetic mutation that can be passed on in families. It damages nerve cells, so they're not able…
Amir Khan is one of the leading athletes from Singapore. He competes in mixed martial arts, and has made a name for himself in ONE Championship. He's tough, fast, 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…
In Tecoman, Colima, western Mexico, Luis Manuel is now a ten month old baby, but he weighs as much as a nine-year-old. Luis Manuel tops the scales at 66 pounds,…
13-year-olds Annie Leeds and Kenley Montez are two peas in a pod. They both share a love for American Girl dolls. They both suffer from a rare disease, which helps…
Fourteen years ago, Sabrina "Bria" Baumann's mother, Sophia, saw a mass growing in a sonogram. Something was wrong. Whatever was growing was on her chest and her neck, and the…
In celebration of her final 18th round of chemo, a brave 12-year-old girl was given a guard of honor march along the halls of the hospital. Her name is Alice…
Shantee Anaquod has gone from planning the end of her life to planning the rest of her life. After being bed-ridden for over a month with the fatal disease, atypical…
Kathy Dzembo felt hopeless with her great-nephew's rare disease so she did what she does best: bake. Connor's scary diagnosis was that of a neurodegenerative disorder called ataxia-telangiectasia, an autosomal…
44-year-old Callan Fabian used to be a fit and energetic man, but due to a rare disease of paralysis, his body is increasingly turning into stone. The disease is called…
Chandler Moore, a boy with a rare disease will be getting the love and support he needs at an annual event in his home town of Georgetown, Salisbury. Chandler's Chance…
Even in the most trying circumstances, Caitlin Ronan, a teenager in England, leveraged everything in her power to help others. After several years in the hospital, battling a progressive rare…
Laura Mayben was living in a time of fear and uncertainty as doctors scrambled to figure out what was wrong with her. With most rare diseases, this time of unknown…
Belmax De Jesus was a star runner at Rutgers University. This weekend, she will be running the Philadelphia Marathon in order to raise money for her young son's extremely rare…
Sandra De Santos has thousands of bubble-like tumors on her body due to a rare disease called neurofibromatosis type-1. It's a hard life, but she has spoken out proudly about…
Tasha Nelson's world turned upside down when her son, Jack, was diagnosed with cystic fibrosis (CF). Little did she know, this would turn her into the political advocate she is…
Stevens-Johnson syndrome is a rare, serious skin disorder that affects the mucous membranes and causes painful blistering and peeling. These blisters can even form inside of the body, making it…
Erin Smith and Alex Barker's story is the stuff that dreams are made of. The couple both suffer from moebius syndrome, a rare neurological disorder that causes weakness and paralysis…
Her name is Jennifer Payne and if you haven't already read about her on Patient Worthy, she's something of a rare disease revolutionary. Her advocacy work on phenylketonuria (PKU) has…
This isn't the first time Barry Dubois, host of the Australian cooking show, Living Room, has had cancer. Seven years ago, he was diagnosed with plasmacytoma myeloma. It was different the first…
During a charity event, a proud UK father pushed his daughter on her wheelchair for 21 miles to raise money for her rare disease. Connie Elson is only 9-years-old, but…
Leon "Lee" Garfat is a survivor. The young boy was just 4 months old when doctors told his parents he wouldn't live past 2. He had been diagnosed with a…
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