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…
A recent article published in the journal Sleep Review explores why some people with sleep apnea may still experience sleepiness after treatment, and suggests that it may be linked to…
According to a story from FiercePharma, the US Food and Drug Administration (FDA) has recently ordered a total of 13 different diabetes drugs to begin carrying warning labels about the…
According to a story from Morningstar, Richard Rendina and his family are no strangers to the challenges and tragedy that can come with a cancer diagnosis. Bruce Redina, for example…
According to a story from Hematology Times, a recent phase 2 study found that a three-part combination treatment could be a valuable treatment option for patients with chronic lymphocytic leukemia.…
Despite my misfortune, I still live life to the fullest I can. At three years of age, I was diagnosed with a rare disease, which initially had little impact on…
According to a story from Newswise, the results of a phase 3 clinical trial suggest that the medication tafamidis could substantially reduce the risk of hospitalization or death for patients…
September is Dystonia Awareness Month! Dystonia is a chronic movement disorder, existing in the same family as the more well-known Parkinson’s disease. Symptoms of dystonia are defined by involuntary muscle contractions which…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
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