According to a story from stuff.co.nz., Janelle Brunton-Rennie and Kurt Brunton were celebrating their third wedding anniversary this past January. Little did they know that the next day, their lives…
According to a story from BioPortfolio, the drug development company Dicerna Pharmaceuticals recently announced the release of proof of concept data in its Phase I trial testing the company's experimental…
According to a story from Medpage Today, three recent research studies have managed to reveal new biomarkers for myelodysplastic syndromes. Biomarkers are a crucial factor for understanding a medical condition…
The George Washington (GW) University School of Medicine and Health Sciences has announced that they and twelve other research centers are collaborating with the Scleroderma Research Foundation to launch the…
The medical company Biogen has announced that the first patient has been enrolled in a Phase 3 clinical trial investigating a drug as a potential treatment for severe cerebral edema…
According to a story from the Harborough Mail, Magnus, who is six years old, was diagnosed with neuroblastoma around Christmas last year. Unfortunately, the disease had already spread and was…
The US Department of Labor has shared an opinion letter that protects the job security of eligible living organ donors who need to take time off for their donation. For…
Content Warning: This article discusses sensitive topics of mental illness and suicide as it relates to rare and chronic illness. There's no easy way to talk about suicide. This article…
Doctors in Britain are being urged to write outpatient clinic letters in plain English and address them to their patients, rather than using technical medical language written to the patient’s…
A new clinical trial, which can be found here at clinicaltrials.gov, is slated to begin and is currently recruiting patients. In this trial, the investigational drug pacritinib will be tested…
According to a story from PR Newswire, the Hereditary Neuropathy Foundation (HNF) recently announced that it will be conducting a meeting with the US Food and Drug Administration (FDA). This…
Who Lives With a Chronic Illness? A Lot of People. More than half of the world’s population lives with a chronic condition and of the 2 trillion the US spends…
According to a story from The Chicago Tribune, Darnesha Bankston, age 23, was rushed to the hospital just before Christmas last year with a bunch of severe, life threatening symptoms.…
According to a story from Shawnee Mission Post, the nonprofit organization RareKC is working to support people with rare diseases that are living the Kansas City area. When living with…
Happy Friday Everyone! As we get ready for the weekend, we want to spotlight four articles. We have an article about a man with Parkinson's who uses social media to…
According to a story from statnews.com, Dr. Julia Brody, who heads the Silent Spring Institute located in Newton, Massachusetts, says that her laboratory has always allowed patients and study participants…
According to a story from the Santa Cruz Sentinel, the earliest results from a critical gene editing study could offer some encouragement for those hoping to treat rare genetic diseases…
Based on a report by Parkinson’s News Today, a recent study confirmed the safety of an increasingly popular Parkinson’s treatment. The treatment, known as deep brain stimulation, has long been…
Another article previously published under "Featured Adult: Rebekah Palmer's Story" in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017: I feel an obstacle in being the adult patient…
According to a story from sectorpublishingintelligence.co.uk, a study from the Fraser Institute suggests that the Canadian government's initiative to more closely control the pricing of drugs could place access to…
Facebook and social media has garnered a lot of attention the last handful of years – and largely for negative reasons. At this point, when you think of Facebook, the…
The information in this article is sourced from this leaflet from Frambu and this publication from Eurordis. You can also visit Frambu’s website by clicking here. Frambu is a national centre…
According to a report by wearable-technologies.com, people living with ALS may soon enjoy a new method of communication. A new technology, known as EyeControl, plans to provide a way for…
According to a story from The Rheumatologist, rheumatologists, as specialists in autoimmune disease that can affect multiple body systems, are in a key position to diagnose and treat vasculitis. In…
1LifeMax Laboratories, Inc. has announced that they have entered into an agreement with Novartis Pharma AG that gives them an exclusive worldwide license for an investigational drug called BPR277. LifeMax…
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