According to a story from kshb.com, Maureen Boesen was already prepared for the worst when she first took a DNA test in order to determine if she carried a BRCA…
Any fans of RuPaul Drag Race or the art of drag itself? Raise your manicured hand! Well, regardless of your answer - watch how the world of drag and rare…
When Julie Francisco was running on her 55th birthday, she could not ignore the pain in her lower abdomen and how “off" and slow her body felt. After a…
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A Rare Intervention For His Children’s Rare Disease An inspiring article has recently been published in the journal Nature that credits Nick Sireau, a resident of the UK, with…
According to a story from Parkinson's News Today, April is Parkinson's Disease Awareness Month. This year, special focus will be given to patients with the rare, early onset form of…
Robyn Smyth is a 14-year-old girl from Ireland who was diagnosed with neuroblastoma when she was three. Since then she's undergone countless rounds of chemotherapy, investigational treatments, a treasured period…
According to a story from nbcrightnow.com, pulmonary fibrosis affects hundreds of thousands of people in the US. However, many people still have not heard of the disease and are not…
According to a story from Gaucher Disease News, life for 24 year old Madeline Collin, who has Gaucher disease, has never been easy. However, being subject to bullying and a…
According to a story from the Clarion Ledger, Keith Bradshaw of Bolton, Mississippi was on his way to celebrate New Years Eve in 2015 when he was suddenly struck by…
A young girl in Mauritius, an island in the Indian Ocean, has recently been given a second chance at a normal life after receiving a rare disease diagnosis and…
According to a story from the Inter Press Service, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease has just recently concluded. Hansen's disease,…
According to a story from ctvnews.ca, a recent treatment with gene therapy appears to have changed the life of thirty year old Josh McQuillin, who has a urea cycle disorder,…
According to a story from yahoo.com, actress Kathy Bates realized when she was fairly young that she was at an increased risk for breast cancer. This was because both her…
The book Five Feet Apart was first released to the public in November 2018 and on March 15th, 2019, a film based on the novel was released into theaters. The…
According to a story from the Yale Daily News, Brian Wallach, class of 2003, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in November of 2017. Although being…
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…
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