Khadeeja Munchi - Kay for short! - of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she's decades older. "Life…
A story published on ESPN.com, and written by Jackie MacMullan, details NBA Hall of Fame inductee Nate "Tiny" Archibald's diagnosis of the rare disease amyloidosis. Amyloidosis occurs when a substance called amyloid builds…
Grab your sneakers because the 2018 Liver Life Walk is on the way, hosted by The American Liver Foundation. Thousands of people will walk to advance liver health and wellness, one…
As most people with invisible illnesses know, it's hard to explain certain behaviors to people when you don't "look sick." There's an endless list of symptoms that need to be…
Rare in Common, a new monthly podcast which features stories about patients with rare diseases, made its debut on Rare Disease Day, February 28th. The podcast's goal is to raise awareness and…
A story from Charcot-Marie-Tooth News highlights the necessity for genetic testing and a physical examination prior to chemotherapy in order to prevent nerve damage in people with asymptomatic Charcot-Marie-Tooth disease…
In an twist of fate, a brand new gene therapy for the treatment of Adrenoleukodystrophy (ALD) uses one of medicine's greatest nemesis, HIV, to treat this fatal genetic brain disease-- and…
According to a story from SMA News Today, a recent study has demonstrated that the parents of children with spinal muscular atrophy are often skeptical about enrolling their kids in…
Discussion on Right to Try legislation continues, and the federal government could soon change existing rules. Many people wonder whether or not patients should have the right to try potentially…
While learning about cancer at a molecular level while being a medical student, Omar Salman from Virginia Tech Carillon School of Medicine learned much more firsthand when he was diagnosed…
According to a story from asianscientist.com, a group of Japanese researchers have managed to unearth a genetic mutation that is associated with progressive supranuclear palsy. The discovery is helping scientists…
The EveryLife Foundation for Rare Diseases hosted a panel discussion on Right to Try Proposals, as part of their 2018 Legislative Program for Rare Disease Week on Capitol Hill. What…
According to a story from triblive.com, Roger Ziegler has self-published a book about his family's experience with his son Noah. Noah is now a healthy 24-year-old, but there were multiple…
According to a story from the Lancashire Telegraph, Dr. John Timms, age 48, was recently diagnosed with a rare and deadly form of cancer: mesothelioma. Dr. Timms had committed much…
A gene therapy for Pompe disease is the first treatment of its kind to be clinically tested, reports Duke University. Researchers at the University, working with NCATS Therapeutics for Rare…
One of the greatest gifts of being a kid is imagination. When you're a kid, anything is possible and even the hardest times can turn into something so much better…
For so many in the rare disease community, courage isn't a just a virtue - it's a necessity. Many have to overcome odds and obstacles that most others don't have…
According to a story from curetoday.com, a recent study indicated that many patients with uveal melanoma reported having unmet psychological and informational needs, particularly in the first several months after…
The average American might not be interested in walking two miles every day. However, for Patricia Coleman, it is an activity in which she proudly partakes! In honor of Sarcoidosis…
Ashley Moore survived cancer. For many people, that’s enough. Moore, however, chose to give back in a surprisingly direct and immediate way. She decided to become a nurse. Keep reading…
We hope that everybody is having a great Easter, Passover, or first taste of spring! This week we have a story about sisters with Batten disease who are finally being…
As we close out the month of March - it's important to give a little thought to some of the lesser-known rare diseases that are often overlooked. Bleeding disorders is…
According to a story from cancercompass.com, a recent study has demonstrated that income level is a significant factor in determining survival for patients with anal cancer. In general, the study…
According to a story from GlobeNewswire, the biotechnology company argenx announced recently that its investigational therapy ARGX-113 was granted orphan drug status by the European Commission. This designation is based…
According to an article from the Augusta Free Press, a research team from Vanderbilt University and the Virginia Tech Carilion Research Institute has successfully managed to uncover the manner in…
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