By Danielle Bradshaw from In The Cloud Copy There are not too many things that a mother won’t do for her child, and Alison Reynolds is the perfect example of…
As we live through the Great Quarantine of 2020, online therapy may be piquing your interest. The world is in a time of uncertainty, which is psychologically stressful (and isolating),…
The Problem with Identifying the Genes that Cause a Genetic Disorder from In The Cloud Copy When it comes to genetic disorders, it can be very difficult to pinpoint exactly what…
To celebrate Rare Disease Day and raise awareness for approximately seven thousand rare diseases, Dr. Francis Collins, director of the National Institutes of Health, recently interviewed a person he…
The first few days of quarantine can feel like a vacation. Finally you have an excuse to say no, stay home, and watch reality TV, and there's nothing anybody can…
According to a story from BioSpace, GeneTx Biotherapeutics LLC and Ultragenyx Pharmaceutical, Inc. have recently announced that the first patient has been dosed in the companies' phase 1/2 clinical trial.…
According to a story from BioSpace, the testing of drugs in clinical trials to address the current coronavirus/COVID-19 pandemic will soon be under way. The biopharmaceutical company Sanofi and the…
According to a story from Independent, a team of scientists from Canada have isolated the strain of coronavirus that has rapidly spread around the globe in recent months. What this…
The COVID-19 pandemic is scary, and it is beginning to cause a panic throughout the world. Through this panic and fear, it is important to remember that progress is always…
My American Nurse recently carried an uplifting article showing increasingly positive changes for cystic fibrosis (CF) patients. A network of over one hundred thirty centers throughout the U.S. provide…
Continued from Part 1 The surgery was over 12 hours long. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in…
Medscape Medical News recently published an article heralding the POUT clinical trial (NCT01993979). The trial brought evidence that patients who received platinum-based chemotherapy after surgery saw their risk of…
A recent editorial focusing on NMDs (neuromuscular disorders) was published in the journal Disease Models & Mechanisms. The editorial highlights a special issue of the journal devoted to building…
According to a story from LocalHealthGuide, COVID-19 has continued to spread through the US and the lackluster government response suggests that it isn't going to be contained any time soon.…
According to a story from Hindawi, a recent study tested a combination treatment for patients with metastatic or locally advanced soft tissue sarcoma. Outcomes for these patients are poor if…
I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed…
Antonio Maltese is a young man living in Virginia. His family has also been devastated by the hereditary rare illness called Huntington's disease. In fact, he was diagnosed with the…
As originally reported in Biospace, there’s good news today for adult patients with acute hepatic porphyria in Europe, a genetic disorder which causes pain and paralysis. The European Commission has…
According to a story from The Charlotte Observer, Chris Younger was 18 when he first was diagnosed with X-linked hypophosphatemia, a rare disease that affects the bones. However, he had…
A recent article in ANCA Vasculitis News highlighted a Chinese study of ANCA-associated vasculitis (AAV), a group of autoimmune diseases. An earlier Chinese study suggested that the risk of…
A recent study has found that undergoing chemotherapy after having surgery for a rare kidney cancer reduces the chance of cancer relapse by 50%. The recent study was published…
By Danielle Bradshaw from In the Cloud Copy. Many of us probably don’t think too hard about our medical records on a day to day basis; which is fair -…
By Danielle Bradshaw from In the Cloud Copy. Right before Thanksgiving last year, Sami Winters, an East Bay resident, was admitted to Benioff Children’s Hospital in Oakland, California. It’s now…
By Jodee Redmond from In The Cloud Copy The results of a case study have found that dantrolene can be used to treat involuntary muscle contractions (dystonia) in children with…
Hey, hand-washing friends! We hope everyone is staying safe and clean right now. Of course, the world is reckoning with Covid-19 right now-- and the rare space is no except.…
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