Elliot Preddie, age 12, is ready to get back to his favorite sport, football. He had to put off playing due to sickle cell disease (SCD). Elliot substituted taekwondo and…
Praise Aki Amedal, a Nigerian living in the city of Oriade, has just completed his first book entitled The Biological Prisoner . . . Finding Hope in a Failing Body.…
by Lauren Taylor from In The Cloud Copy Nearly all babies born in the United States today are tested for a certain panel of genetic disorders within 48 hours of…
by Lauren Taylor from In The Cloud Copy Long QT syndrome, also called LQTS for short, is a disorder of the heart’s rhythm that can possibly cause the heart to…
Dayton Abbott is like many kindergarteners; she loves to tell jokes, play games, and hang out with friends during recess. But her playground at Alexander Elementary School wasn't built for…
This month is Charcot-Marie-Tooth (CMT) Awareness Month. Due to COVID-19, there cannot be any of the typical events, but that doesn't mean there's nothing you can do. From a virtual…
by Lauren Taylor from In The Cloud Copy Having a child, especially for the first time, comes with so many unknowns and questions. What stroller to buy, what to name…
Happy Friday! Monday, Sept. 7 is Duchenne Muscular Dystrophy Awareness Day. DMD is characterized by the inability to make the protein dystrophin in muscles and can result in heart and…
by Caitlin Seida from In The Cloud Copy Isolation as a result of COVID-19 precautions is necessary but can take its toll on your physical, mental, emotional, and spiritual well-being.…
According to Genetic Engineering & Biotechnology News, researchers recently discovered a potential therapy for patients with aggressive subtypes of medulloblastoma. There are four subtypes of this condition. The first is…
Recently, biopharmaceutical company Fortress Biotech announced positive clinical results for CUTX-101 (copper histidinate). The data highlights the efficacy of CUTX-101 for patients with Menkes disease. As there are currently no…
Dealing with grief is different for everybody. Unfortunately, living with a rare disease can bring sadness and grief into one's life. That is why the Livestrong Foundation has offered a…
Phase III clinical trial results of the triple therapy combination for the treatment of severe aplastic anemia (SAA) were set forth in a recent News Medical Life Sciences article.…
Ariella Pacheco of Encinitas, California is a 17-year-old in her senior year at a Carmel Valley Catholic School. Ariella spoke to a reporter for MSN about her new-found passion to…
Business Insider recently interviewed Marissa Oliver, a resident of New York City, who told us about the problems she has encountered during her recovery from COVID-19. Marissa, an arts manager,…
A growing wait list is creating additional stress on patients needing organ transplants. These patients are increasingly desperate according to an article recently published in Genetic Engineering & Biotechnology News.…
A recent article in Med City News outlines the difficult choices patients must make regarding immune compromising but life-saving therapy during the 2020 pandemic. Do they postpone their treatment or…
According to a recent article in Genetic Engineering & Biotechnology News, researchers at the UofSC have presented data stating that the cannabis compound tetrahydrocannabinol (THC) is effective against respiratory distress syndrome…
According to an article from Morningology, the pharmaceutical company Teva has recently been charged by the U.S. Justice Department for conspiring to raise generic drug prices. This is a serious…
The CMT Research Foundation has announced that September will be Charcot-Marie-Tooth (CMT) Disease Action Month. The switch from awareness to action illustrates just how much CMT patients and their families…
According to an article from Newswire, the Alzheimer's Association is awarding Elixiron Immunotherapeutics one million dollars for work on their Alzheimer's treatment, EI1071. This money will go towards a clinical…
A recent article in the Korea Biomed Review reported that the joint research effort by Seoul National Medical College and Helixmith of San Diego, California, found Helixmith’s VM507 antibody effective…
New Zealand has the third highest rate of inflammatory bowel disease (IBD) in the world, but there are only two drugs that are currently being funded to treat it. As…
For patients with rare diseases and their families, life is sometimes isolating. It can be difficult to explain your condition. At the same time, it is incredibly important to find…
According to a story from Charcot-Marie-Tooth News, a recent study suggests that the three components of the investigational therapy PXT3003 work in synergy to improve the condition of patients with…
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