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…
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…
A mutant zebrafish that came into scientist's cross hairs over 20 years ago, has similar symptoms as patients who suffer from nemaline myopathy. This highly rare genetic muscle disorder is…
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…
Shanice Rowe, a mother in Jamaica, was never expecting her baby boy to fall victim to an almost unheard of disease. Now she's struggling financially to keep her boy alive.…
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…
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…
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…
Sometimes, the only thing a rare disease needs is for technology to catch up with the times and save the day. Recently, this came in the form of three dimensional…
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…
Glenda Thompson is a proud grandmother who will stop at nothing to ensure her grandson lives a comfortable life. 4-year-old Cole Thompson is suffering from a rare genetic disorder called…
4-year-old Colt Cosper is coping with a life-threatening disease with his new buddy, Spider Man. Shortly after his third birthday, Colt was hit with the hard diagnosis: myoclonic-astatic epilepsy. This…
Jocelyn Duff didn't expect to feel the contractions as early as she did. She wasn't due for another two weeks. But this is something they were ready for. With the…
While President Trump hopes to overhaul tax credits, Arkansas patient advocate Andrea Taylor is trying to rescue a tax credit that benefits the rare disease community. Taylor's 9-year-old son, Aiden,…
Hofstra is one college campus that gives students with disabilities the support and accommodations they need. They even have their own program called Student Access Services (SAS). The program is…
Julian Randle always wanted to play basketball. Now, the 11-year-old suffering with a rare disease will be joining a college team in Kansas. It was almost like a dream. The…
If you watch "Eastenders" on the BBC, then you're familiar with the jovial Barry Evans character played by Shaun Williamson. You might have also seen him on "Celebrity Big Brother,"…
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