According to a story from Rare Revolution Magazine, Georgia Hart was first diagnosed with Friedrich's ataxia when she was 15 years old. Since then, living with this rare disease has…
According to a story from Scimex, a recent assessment of available treatments for Dravet syndrome and other types of epilepsy has reaffirmed that anticonvulsant medications are still the most effective…
According to a story from BioSpace, the pharmaceutical company Scholar Rock recently announced that its drug candidate SRK-015 was recently granted Orphan Drug Designation by the U.S. FDA. The drug…
May the fourth be with you! This week we're spotlighting four patient stories: one about a father whose daughter has Sanfilippo syndrome, one about losing your spouse to CF, the…
According to a story from Newswise, neurosurgeons at UC San Diego Health can now provide patients with an auditory brainstem implant (ABI) that can preserve some degree of hearing in…
According to a story from bioportfolio.com, a recent study has demonstrated the effectiveness of Trelegy Ellipta, a unique three component combination treatment, in reducing the effects of chronic obstructive pulmonary…
Every year, May 20th is celebrated as International Clinical Trials Day. On this day organizations that are involved in the fields of science and medicine hold events to promote education…
According to a story from the Peterborough Telegraph, James Willis received a disaster diagnosis on his first Valentine's Day after getting married at age 29. James had been worried about…
According to a story from news-medical.net, medical researchers have discovered that the gene called ari-1 can increase the risk aortic aneurysms. Previously, the precise genetic risk factors were not understood,…
Doctors haven’t been able to work out the cause of a young woman’s medical symptoms, and now the New York Times is appealing to the public for suggestions. This article…
When people are faced with cancer, their main concerns are understandably treatment and survival. However, many are shocked to discover that when they survive cancer, another sinister blow on their…
Happy Friday Everybody! This week we're spotlighting two parts of one patient story. We also have news on Alfie Evans and epilepsy research. Sit back and enjoy this week's Editor's…
According to a story from Cosmos Magazine, Dr. Kathryn North is committed to researching the vast expanse of the human genome in order to pinpoint the ways in which genes…
According to a story from the National Center for Advancing Translational Sciences, a group of scientists from the National Institutes of Health (NIH) has unearthed a new mechanism that could…
A team of childhood cancer researchers, known as the Pediatric Cancer Dream Team, were first created in 2013 through collaboration between the charitable organizations Stand Up To Cancer (SU2C)…
So what is Fabry disease you ask? You came to the right place! Fabry disease is a genetic, lysosomal storage disorder that occurs when a specific kind of fat known…
A clinical trial is ongoing to test if stem cells harvested from bone marrow and injected into an ALS (amyotrophic lateral sclerosis) patient's spinal fluid will stop or slow the…
This week is National Infant Immunization Week! For many of us, it was an anxiety-riddled memory of getting a ton of shots at the doctor's office when we were younger. And…
According to a story from The Motley Fool, The gene therapy development company bluebird bio has been working on a treatment for beta thalassemia, and it has the potential to…
AKU Society is hosting it's 2nd International Patient Workshop in Liverpool's Bluecoat. The event is intended to educate about new scientific research, clinical trials, diet guidance and more. RVSP to…
Happy Friday Everybody! This week we're spotlighting three patient stories: an ALD patient full of optimism and love, a beauty pageant contestant with a noble goal, and a woman with…
According to a story from biotechconnectionbay.org, medical researchers are beginning to more closely investigate that possibilities that drug repurposing, or using old drugs for treating different illnesses, could offer. While…
According to a story from statnews.com, a drug derived from substances originating in the cannabis plant may be nearing approval by the U.S. Food and Drug Administration. The drug is…
The pharmaceutical company Lonza has just opened a new state-of-the-art manufacturing facility to produce cell and gene therapies. You can find the full press release here, on Lonza’s website.…
According to a story from Summit Medical Group, a recent study indicates that survivors of testicular cancer may have a greater risk for heart disease. Compared to many types of…
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