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…
According to a story from wired.com, a new genomics marketplace called Helix will soon start selling genetic tests directly to consumers. These tests are the same ones that doctors use,…
According to a story from news.vanderbilt.edu, Charlotte Haffner has been working hard to advocating on behalf of amyloidosis patients. She recently underwent a heart transplant and stem cell transplant in…
According to a story from Charcot Marie Tooth News, a small subdivision of the National Institutes of Health (NIH) is leaning into its role to assist with research into rare…
According to a story from PR Newswire, the pharmaceutical company Therapix Biosciences recently announced the results of a Phase IIa study for its drug candidate THX-110. The therapy is indicated…
According to a story from medpagetoday.com, researchers are beginning to realize that symptoms of pediatric spondyloarthritis present themselves in a distinct way when compared to the symptoms that are experienced…
Hope everybody is enjoying the warm weather! This week we have patient stories about a woman with MS who started a support group and a rare mom who took issues…
According to a story from QQ Malaysia Online, patient advocates are looking for ways to raise awareness of rare diseases in Malaysia and get help to forgotten patients that desperately…
According to a story from scimex.org, a recent data review is calling into question the previously held consensus that common pain medicines such as NSAIDs and paracetamol could make inflammatory…
No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects connective tissue throughout the body. It…
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