At four years old, Norah Gratz-Lazarus of California is a sweet, bubbly girl, full of spirit. She's a big sister, and loves jokes, ice cream, and chocolate chip cookies. However, Norah…
According to a story from BioSpace, Incyte Corporation and Eli Lilly and Company recently announced that the US Food and Drug Administration (FDA) has given the drug baricitinib Fast Track…
According to a story from news-medical.net, a team of researchers has found that patients who are more intellectually active can slow the neurodegeneration that appears in Huntington's disease. Such as…
Whose ready for some Monday motivation to get your week started? Readers of the Wall Street Journal might be familiar with their "What's Your Workout?" series, profiling someone's fitness and…
According to a story from NTD, a former NFL cheerleader successfully diagnosed her own rare disease, pectus excavatum, after her symptoms were dismissed by her doctors as nothing more than…
According to a story from Cosmopolitan, a young woman who we will call Courtney (real name changed for privacy) was diagnosed with chronic fatigue syndrome. However, this diagnosis only occurred…
Neurodegenerative disorders affect millions of people across the world. They include Amyotrophic Lateral Sclerosis, Parkinson's disease, Huntington's disease, and Alzheimer's disease, among others. For most neurodegenerative diagnoses, there are no effective treatments, no…
According to a story from philly.com, Markelle Fultz, who plays as a guard for the Philadelphia 76ers, was recently diagnosed with thoracic outlet syndrome. It has not been good news…
According to a story from Charcot-Marie-Tooth News, a group of scientists have developed a new scale that can be used to predict disease severity in infants that are diagnosed with…
For a long time, we've known that, at least in North America, men develop cancer at higher rates than women. However, there is still some mystery concerning the impact of…
Angelman Syndrome (AS) is a neurogenetic disorder. It's not fatal, but prevents patients' from living independently. It causes neurological impairment, seizures, and balance issues among other problems. It's caused by a…
According to a story from Debra of America, a new Phase 1 clinical trial being operated by Stanford University is currently recruiting participants. This trial will be a test of…
According to a story from Cornwall Live, parents Ben Keverne and Hannah Chapman were recently devastated by the loss of their daughter Maisie. The little girl was diagnosed with mitochondrial…
According to a story from Charcot-Marie-Tooth news, researchers have found that models of mutations affecting the mitofusin 2 protein (MFN2), which is the protein that is affected Charcot-Marie-Tooth disease type…
Charcot-Marie-Tooth disease (CMT), is a rare neurological condition. It's hereditary, and it affects the way nerves communicate with muscles. There are different types of CMT, determined by which genes are…
According to a story from pm360online.com, the drug developer Zynerba Pharmaceuticals, Inc., recently announced the release of data from an open label, 12 month study of the company's experimental product…
According to a story from bioengineer.org, a team of researchers from around the world have collaborated and successfully discovered a critical mechanism that leads to lung inflammation following exposure to…
Angelman syndrome impedes the brain's ability to distinguish background noise from whats important. This is a result of a reduced tonic inhibition, caused by a loss of function of the…
According to a story from the Centers for Disease Control and Prevention, the National ALS Registry is playing a vital role in learning more about amyotrophic lateral sclerosis, a devastating…
Who's in the mood to help grant a young girl her Christmas wish this year?! People who know 10-year-old Paola Vega describe her as a cute, spunky princess who can't…
According to a story from liverpoolecho.co.uk, Isabel Morison is a 39-year-old music teacher with a nine year old son Dylan and a six year old daughter, Lucy. Last March, she…
According to a story from Able Magazine, 37 year old Victoria Clutton recently got her first job thanks to the efforts of the UK nonprofit organization ASTRiiD (Available Skills for Training,…
According to a story from USA Today, the day that Stephanie Herfel first picked up her Siberian husky Sierra was easily one of the most important of her life. This…
In August, Duke Cancer Center's Patient Support Program had a backlog of 150 wigs. That means 150 cancer patients who didn't have access to an item that, while simple, provides…
We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United Foundation. Its latest stop was…
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