According to a story from Star Tribune, Chelsea Coenraads was 14 months old when her mother Monica became convinced that something seriously wrong with her daughter. She had failed to…
According to a story from theindychannel.com, brothers Elias, age eleven, and Emmett, age seven, were both born with the rare bleeding disorder hemophilia A. However, this has not stopped them…
According to a story from Parkinson's News Today, a recent study has found a new connection between two different features that appear in Parkinson's disease. These features are lysosomal dysfunction…
According to a story from Korea Biomedical Review, Seoul National University Hospital (SNUH) in South Korea has just announced recently that the process of recruiting patients for the National Bio…
According to a story from Buzzfeed News, a recent test of an experimental COVID-19 vaccine being developed by Moderna Therapeutics demonstrated that it was able to produce antibodies in all…
According to a study on biorxiv.org, a method called intranasal mechanical stimulation (INMES) appeared effective in reducing symptoms associated with myalgic encephalomyelitis (also called chronic fatigue syndrome) by around 30…
According to a story from PR Newswire, new international treatment recommendation guidelines have recently been updated for nontuberculous mycobacterial (NTM) lung disease. The update pertains to a variant known as Mycobacterium…
According to a story from meaction.net, Dr. Anthony Fauci was recently asked a question about what was being done to address so-called COVID-19 "long haulers," and their potential risk of…
According to a story from keloland.com, Westin Cuka, age six, was first diagnosed with neurofibromatosis, a rare disorder, three years ago. Since then, the family has traveled on multiple occasions…
Each year, June 13th is celebrated as Gastrointestinal Stromal Tumors (GIST) Awareness Day. The ultimate goal of awareness days for rare diseases is to help inform both the general public…
According to a story from GlobeNewswire, the biopharmaceutical company Onconova Therapeutics, Inc. has recently published results from a phase 1 clinical trial that was sponsored by the company. This trial…
According to a story from Medscape, a recent cohort study published in the journal Cancer has concluded that updates are needed to the staging classification currently in use for renal cell carcinoma…
According to a story from thv11.com, Susan Head of Little Rock, Arkansas is a marine veteran who now faces a new battle: Castleman disease. In the midst of the ongoing…
July is recognized as Juvenile Idiopathic Arthritis Awareness Month. Though arthritis is often considered an illness that is associated with old age, it is estimated that around 300,000 children in…
According to a story from The Boston Herald, a new treatment for acromegaly called Mycapssa was recently approved by the US Food and Drug Adminstration (FDA). Developed by Chiasma, a…
According to a story from BioSpace, the drug company Zynerba Pharmaceuticals Inc. recently released the results from a clinical trial. This trial was testing the company's product Zygel™ (CBD gel)…
According to a story from Physician's Weekly, a recent study has concluded that the drug allopurinol is not capable of slowing down the progression of chronic kidney disease. The research,…
According to a story from Cystic Fibrosis News Today, Eloxx Pharmaceuticals had just announced recently that it is officially re-opening enrollment for its phase 2 clinical study. This trial will…
According to a story from PR Newswire, the US Food and Drug Administration (FDA) has recently approved a new treatment for Dravet syndrome, a rare disorder that causes seizures and…
According to a story from ANCA Vasculitis News, a recent review study has determined that patients living with ANCA vasculitis and other related diseases are at a higher than average…
According to a press release from HemoShear Therapeutics, the company has recently received official clearance from the US Food and Drug Administration (FDA) in regards to its Investigational New Drug…
According to a story from Parkinson's News Today, a recent study has found that a combination treatment of levodopa and carbidopa delivered to the intestines could be an effective treatment…
The Rare Diseases Clinical Research Network (RDCRN) has recently launched a survey aiming to assess the impact of COVID-19 on the rare disease patient community. This initiative is important as…
According to a story from BioSpace, the biopharmaceutical company Dicerna Therapeutics, Inc. has announced recently that the US Food and Drug Administration (FDA) has granted Rare Pediatric Disease designation to…
Last week, I had the privilege of attending a webinar organized by Research!America titled Partnership, Progress, Pandemic: The Impact of COVID-19 on Medical Discovery. As implied in the title, the…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
