According to a story from Nursing Times, Claire Naisbitt is one of three multiple sclerosis specialist nurses that treat patients that reside in the Teesside community. She first took the…
My name is Casey. I’m 27 years old and have a 50% chance of becoming symptomatic for a neurodegenerative disease in my 30’s (if my onset aligns with that of…
According to a story from Statesman Journal, nine year old Haley Pollman isn't so different from most other girls her age. She loves dresses, Barbie dolls, and animals, and still…
According to a story from Kractivist, 38 year old Payel Bhattacharya has the rare genetic disorder von Hippel-Lindau disease, or VHL. Payel has written a book about her life called A…
Olivia Egge is an osteosarcoma cancer survivor and an advocate for all those living with rare conditions like her own. The senior in high school living in Arlington, Virginia recently…
Spinal Muscular Atrophy Spinal muscular atrophy (SMA) is caused by a mutation in the SMN1 gene. This mutation results in a loss of motor neurons causing weak and atrophied muscles.…
Music and rock 'n' roll lovers already know him name, but Peter Frampton soon will become a new type of rock star: rare disease advocate. The British guitar legend announced…
The Star Gazette recently reported that Alan Ramsay Evans, a 34-year-old man from Horseheads, New York, remains in the hospital after developing respiratory failure. Three decades ago, when he was…
Tommy Salisbury is eighteen years old. Unlike many teenagers, he is making big moves in the fundraising community and working hard to be a leader in efforts to find…
According to a story from the Huffington Post, a recent Instagram post from the Barbie brand of dolls indicates that the company is beginning to expand its line of dolls…
Cystic Fibrosis Cystic fibrosis (CF) is a rare condition that causes mucus to build up in the lungs and the digestive system. It results in chronic lung infections, lung inflammation, and…
According to a story from BBC, Mats Steen passed away at 25 years old due to complications from his Duchenne muscular dystrophy. Upon his death, parents Robert and Trude grieved…
According to a story from metro.co.uk, celebrity Katie Price, an English television personality, author, singer, and designer is reportedly considering part time residential care for her son Harvey. Harvey has…
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
According to a story from abc13.com, Makenna Brown, a four-year-old girl from Texas, has been plagued by relentless itching thanks to her Alagille syndrome, a rare genetic disorder. Her distressed…
According to a story from northjersey.com, Adam Levitz's life was hanging in the balance just a few weeks ago. His liver, which had endured years of damage from the rare…
According to a story from FOX31 Denver, Kelly Conley of Arvada, Colorado saw her circumstances change dramatically when she first began experiencing symptoms of Cogan's syndrome, a rare disease that…
According to a story from the Hindustan Times, seventeen year old Yash Galpelli was born with Wilson's disease, a rare genetic disorder. For a long time, he had no idea…
According to a story from wect.com, local singer Dustin Chapman of Whiteville, NC has been struggling for years against a rare disease called achalasia, which affects the esophagus. He recently…
Ehlers-Danlos Syndrome Ehlers-Danlos syndrome (EDS) refers to a group of rare disorders which affect the connective tissues in the blood vessels, bones, skin, and other organs in the body. It's caused…
Tristan Lederman's health started to take a turn at the beginning of 2017. Tristan lived at home with his family and depended on his family members and at-home caregivers…
One of my better friends within the cystinosis community is Mika Covington. We met at a cystinosis event in 2016. I had read some of Mika’s entries posted in her…
According to a story from the New York Times, a 50 year old Houston man had seen his health decline rapidly in a little over a year. After declining from…
According to a story from philly.com, it was August 2018 when Lisa Semple of Cherry Hill was first diagnosed with breast cancer. Unfortunately, her breast cancer had reached stage four,…
This is the story of Tom Dinwiddie, who was diagnosed with terminal cancer on April 2, 2012. This year, now age 69, he is officially six years cancer free. The Diagnosis…
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