According to a story from the Tennessean, learning that both her husband and daughter had the rare and dangerous disease atypical hemolytic uremic syndrome (aHUS) was devastating for singer-songwriter Cameron…
According to a story from globenewswire.com, the drug development company Galectin Therapeutics, Inc., recently announced its plans to go forward with Phase 3 trials for GR-MD-02. The company is dedicated…
A new fitness competition held its first contest this April in Sunderland. A contest based around individual functional fitness, First Means Everything donated a percent of its sign-up fees to…
Collaboration between the FDNA, the Cure Sanfilippo Foundation, and the Jonah’s Just Begun Foundation has led to technology that successfully recognises the facial phenotype (observable characteristics) of patients with mucopolysaccharidosis…
It may not be surprising news to find that the United States now pays more for prescription drugs than any other high-income country. This was not always the case however. Read…
The pharmaceutical company Biohaven has announced that they will be using an expanded access program to make an experimental drug for amyotrophic lateral sclerosis (ALS) available to patients before F.D.A.…
In Canada, it is illegal to require a person to disclose results of genetic testing in any form of contract. The government of Quebec, however, recently issued a series of…
A recent study published in the Lancet has investigated the effects of starting chemotherapy on patient survival, according to the UK Government website. It was found that many factors can…
According to a story from BBC, Alex Hill was just eight-years-old when his mother, Sarah, started forming a hunch that something was off. The first warning sign came when Alex…
Many times, diseases can take very physical tolls on a person’s body. These physical symptoms can sometimes be uncomfortable, they can be painful, and sometimes they may even be embarrassing…
Last week saw the Food and Drug Administration’s (FDA) approval of Aimovig. Aimovig (generically referred to as erenumab-aooe) is a novel approach to treating migraines. It boasts the ability to…
Scientists working at the Broad Institute of MIT and Harvard are trying to build a collection of every drug ever developed. They are planning on using the collection to re-purpose…
According to a story from EPM Magazine, the pharmaceutical company Orchard Therapeutics received Rare Pediatric Disease Designation for its gene therapy drug candidate OTL-200. The therapy is in development for…
According to a story from Financial Buzz, the pharmaceutical company Albireo Pharma recently announced that the first patient has been enrolled in its Phase 3 trial testing its experimental candidate…
How far would you go to stop cancer? Not metaphorically. Literally. Caryn Lubetsky has an answer. It’s the distance between Key Largo and Key west. Caryn Lubetsky is an attorney,…
A clinical trial that is investigating a drug designed to treat ulcerative colitis has completed patient enrolment, reports Business Wire. Ulcerative colitis is a long-term inflammatory bowel condition. The severity…
A team of researchers at Imperial College Lonon in the UK have carried out studies that suggest it may be possible to use gene editing to treat pancreatic cancer, reports…
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
The U.S. Food and Drug Administration (FDA) has just approved a subcutaneous version of a drug called Actemra (tocilizumab) for treating patients with active polyarticular juvenile idiopathic arthritis (PJIA) who…
According to a story from MD Magazine, the FDA has recently approved the first multiple sclerosis treatment catered to children with the disease. In this instance, the agency did not…
According to a story from news-medical.net, researchers working with the Institute for Experimental Pediatric Endocrinology of the Charité - Universitätsmedizin Berlin were able to successfully treat young patients that were obese…
Energy industry leaders such as Love’s and Trillium recently held a fundraiser in Houston, Texas. The funding supported Texas Children’s, the local branch of Children’s Miracle Network Hospital. One unique…
As someone who has suffered with chronic vertigo for the past year and a half, and who deals with a chronic vestibular condition, I know all too well how debilitating…
Happy Friday, everybody! This week we're highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC patient offering guidance on how…
According to a story from floridahospital.com, Huey Lewis, the front man and vocalist of the highly successful pop rock band Huey Lewis and the News, was recently diagnosed with Meniere's…
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