According to a story from The Chicago Tribune, insufficient supplies of donated organs that could be used for transplant surgeries result in 33 deaths per day in the US. At…
According to a story from The Straits Times, Nicole Lim, who recently turned eighteen, learned that she had three different rare diseases when she was just thirteen years old. Getting…
According to a story from drugs.com, the biopharmaceutical company Catabasis pharmaceuticals recently provided updates on the status of its Phase 3 clinical trial testing its investigational therapy CAT-1004, also known…
A new bronchiectasis research study was added to the clinicaltrials.gov website on New Years Day. This observational study, called the BRIDGE Study (Bronchiectasis Research Involving Databases, Genomics, and Endotyping) is…
Yesterday marked the beginning of season 23 of The Bachelor on ABC-- a TV show that I am told I invest in to an embarrassing degree, and yet, somehow, feel…
When you're told your child has a rare, life-threatening condition you exhaust every resource trying to find answers. But the rarer the condition, the harder those answers are to find…
An article at ChrisD.ca recently shed a light on the difficulties of dating and intimacy when living with a terminal condition. Intimacy can be a stressful thing under the very…
Originally reported in a story from CNN, two year old Zainab Mughal from Pakistan has been fighting neuroblastoma- and in order to survive her treatment, she is going to need blood…
According to a story from EurekAlert!, the results of a recent Phase 3 clinical trial suggest that the targeted therapy sorafenib could be an effective treatment option for desmoid tumors.…
According to a story from Gizmodo, the genetic mutation which causes certain types of dog breeds, such as Boston terriers and bulldogs, to have spiral shaped, corkscrew tails appears to…
CRISPR Therapeutics and Vertex Pharmaceuticals have been collaborating to develop a new treatment option for Sickle Cell Disease. It's called CTX001, a type of stem cell therapy. This drug has…
According to a story from ESPN, there were times when Lynn Rogers wasn't sure if she was going to be able walk, much less run, ever again, but she wound…
According to a story from the Washington Post, 47-year-old Hector Hernandez of Downey, CA, was subject to frequent jokes about his prominent stomach. Hector has always been a large man,…
According to a story from clinicaltrials.gov, an observational study titled "The Impact of Charcot-Marie-Tooth Disease" was added to the site on December 20th, 2018. The study itself first began on…
According to an article originally published by HuffPost, an ambitious 34-year-old doctor is peddling plasma transfusions at steep prices, claiming a number of dubious health benefits. Ambrosia, LLC In 2014…
Paroxysmal nocturnal hemoglobinuria (PNH) prematurely destroys the bodies red blood cells (hemolysis). It can cause severe anemia, kidney disease, fatigue, as well as other symptoms. Up until now, there has…
According to a story from ksl.com, a recent poll found that the majority of Americans are in support of using gene editing technology in order to protect newborns from genetic…
A story from Family Features Editorial Syndicate, published on PR Newswire discussed how getting diagnosed with a chronic, rare disease can be an overwhelming time for a person. While the experience can also give a meaningful…
Happy New Year! For our first Editor's Choice of 2019, we want to highlight four articles from the last couple weeks. First, we have the story of young man who…
According to a story from the Irish Examiner, 31 year old Orla Tinsley is celebrating her first year of life following her life saving double lung transplant operation. This lung…
According to a story from BioSpace, the biopharmaceutical company Retrophin, Inc., recently announced that the first patient has been treated in the company's Phase 3 clinical trial testing sparsentan as…
According to a story from CBS News, Garland Benson, age 14, has undertaken a daunting task in order to save the life of his older sister Christiane. She was born…
A Fanconi Anemia (FA) investigative gene therapy now has PRIority MEdicines (PRIME) designation from the EMA. This designation helps to accelerate the development of therapies for patient populations who have…
Nash Jones is 18 months old and he is battling against the clock for a better quality of life. Nash Jones has a very rare genetic disease called Lesch-Nyhan syndrome.…
Amyotrophic Lateral Sclerosis (ALS) stops communication between the brain and voluntary muscles. Patients slowly lose muscle strength, affecting their ability to walk, talk, and even breathe. The illness eventually results…
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