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.…
According to a story from businesswire.com, the Bristol Myers Squibb Company recently released the topline results from its phase 3 clinical trial. This study was testing a combination treatment consisting…
According to a story from Healing Hugs Haven, the rapid spread of COVID-19 around the world has been getting a lot of airtime in the news lately, and for good…
As originally reported in Targeted Oncology, a man was diagnosed with EGFR-Mutated Non-Small Cell Lung Cancer, also known as EGFR-NSCLC. The 60 year old had a previous medical history that…
By Danielle Bradshaw from In The Cloud Copy Pompe disease is the lack of a specific protein within the body that helps break down glycogen - a complex sugar that…
As originally reported in the Cincinnati Children's, Brittney writes how she came into the world of rare diseases when her and her husband Michael decided to adopt a baby who…
As reported in Creaky Joints and Healing Hugs Haven; the media has been overtaken by coronavirus on the move. Rare disease patients need to know what that means and what…
Rare Disease Institute The Rare Disease Institute (RDI) is a new initiative aimed at improving collaboration between rare disease stakeholders. The aim is to facilitate faster diagnosis and better care…
NPR News recently featured an article announcing that scientists at Portland’s Casey Eye Institute have attempted to use CRISPR to edit a gene with the DNA still in place.…
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