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…
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…
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…
Shani Dhanda, 31, was at a loss-- she had sent hundreds and hundreds of job applications, and no one even interviewed her. The Birmingham woman stands at 3'10". She was…
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,"…
From paintings and statues to circus advertising and reality TV, the last few centuries of art has not always favored people with achondroplasia. Although some of the earliest pieces of…
16-year-old Holly LaPrade found her muscle and tendons slowly turning into bone because of a rare disease she had no control over, a news that sent a crushing blow to…
The Green family is trying to raise money for their daughter's life-saving surgery and it's now becoming a race against the clock. 18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome,…
Advocates for people with rare diseases such as hypophosphatasia (HPP) are changing the world. Moms and dads, aunts and uncles, brothers, sisters, cousins, spouses and friends play a tremendous role…
Helen Edgar, 41, was diagnosed with a rare disease that doctors failed to catch soon enough before her unexpected death. Her family won a settlement of £415,000 in High Court.…
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