Happy Friday, everybody! This week we have a story about a woman with Dysautonomia and a wide range of interests, a mother who finds strength in a moment of grief,…
According to a story from the Sunderland Echo, a man from the Sunderland area, Graydon Downs, was diagnosed with glioblastoma when he was just 33 years old. At that time,…
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…
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…
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…
An article from SRN News is reporting that a lot of people with familial hypercholesterolemia are going through life without getting the treatments that could help them, such as statins.…
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…
According to a story from biopharmadive.com, the Swiss pharmaceutical company Novartis has entered a partnership with researchers from the engineering and applied sciences school at Harvard University. The team will…
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…
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…
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…
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…
According to a story from mysunshinecoast.com.au, an international research team has uncovered a potential biomarker that could help develop treatments for multiple myeloma, a rare form of cancer. Currently, multiple…
According to a story from ibdnewstoday.com, a recent study from Italy suggests that people with severe cases of inflammatory bowel disease are more likely to develop non-alcoholic fatty liver disease.…
Michael Mullan was only a baby when he was diagnosed with cancer for the first time-- specifically neuroblastoma, a childhood cancer which had a low survival rate. Since then, he…
According to a story from GlobeNewswire, The pharmaceutical company AveXis, Inc., a company that specializes in the development of gene therapies, recently announced that its candidate AVXS-101 was awarded SAKIGAKE…
According to a story from brightsurf.com, a recent research finding suggests that fibrolamellar hepatocellular carcinoma, a rare form of liver cancer that can occur in children, is capable of metastasis…
According to a story from healio.com, scientists have developed an easy to use testing method for Barrett's esophagus, which can be a precursor to esophageal cancer. The new device combines…
Following Rare Disease Day at the NIH Clinical Center in early March, we spoke to the NIH about remaining questions we had pertaining to rare disease research. We are impressed with…
In the beginning of March, Patient Worthy joined many other groups from the rare disease community for Rare Disease Day at the NIH Clinical Center, an event which you can…
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