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…
According to a story from Science and Technology Research News, a group of researchers from the Cleveland Clinic led by Dr. Aziz Nazha will soon present a new myelodysplastic syndromes…
January is Cervical Health Awareness Month! So, why not use the momentum and goal-making spirit of New Year's Resolutions to make sure you get screened for cervical cancer and schedule…
Cold agglutinin disease (CAD) occurs when the body's antibodies destroy their own red blood cells. It is a form of hemolytic anemia, meaning the body can't produce enough blood cells fast…
According to a story from Pharmaphorum, there are a number of new treatments that have been introduced or have seen major strides in development over the last year. More patient…
While rare disease affects people all around us, often the mainstream press . Which is why it's extra important when a news outlet as big as the Los Angeles Times…
When Seth was twelve years old, he and the rest of his family began to realize something was wrong with his mother. Seth can remember conversing with her pleasantly, and…
According to a story from sectorpublishingintelligence.co.uk, the clinical stage pharmaceutical company Retrotope recently announced that the first patient had been dosed in its Phase 2/3 clinical trial. The trial will…
On Christmas Eve, Josiah Viera passed away at the age of 14, after a public, inspiring journey with the extremely rare disease progeria, which causes accelerated aging in children. Josiah was…
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of Patient Worthy. According to a story from Vox, a review of over…
According to a story from Scoop Independent News, citizens of New Zealand that have the rare bleeding disorder hemophilia A will soon have access to the drug emicizumab (marketed as…
The display at my local gas station is an impressive one. CBD oils - from no fewer than three different manufacturers and in half a dozen flavors - are packed,…
As it turns out, I am obsessed with Scrubs. The TV show, not the song. When I was at my sickest to date, those TV episodes got me through a…
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