What’s the Good News? Researchers have successfully completed initial testing of an experimental Parkinson’s medication called TT-P34. The early results are very encouraging and suggest
The history of cystinosis is one of the most successful examples of rare disease research leading to meaningful treatments. In a recent interview with the
This is my son Nikolai. Nikolai was recently diagnosed with Mucopolysaccharidosis type 2, or “Hunter Syndrome.” A rare genetic form of childhood dementia, it’s caused
As reported on PharmaBiz, a combination of Imfinzi (durvalumab) and Imdelltra (tarlatamab) has delivered significant improvements in survival outcomes for patients with extensive-stage small cell
At the age of 18, I was diagnosed with a rare swallowing disorder called Achalasia. At the time of this video, I had undergone several
In honor of World Duchenne Awareness Day on September 7th, Mal Duffin has invited us to share this app designed for parents whose children are living
As reported on World Pharma News, the U.S. Food and Drug Administration has granted approval to daraxonrasib, an oral RAS-targeting therapy, for adults with metastatic
A novel investigational Ebola vaccine has shown encouraging safety and immunogenicity results in a first-in-human clinical trial, supporting further development of an alternative vaccination strategy
Editor’s Note: Patient Worthy is honored to share this article, originally written by David St. Denis, President & Director at Anteris Technologies. Transcatheter aortic valve
Although Nancy Wexler’s efforts were largely responsible for creating a genetic test to locate the Huntington’s gene, she refused to take the test herself saying
As reported on Fierce BioTech, Guardant Health has secured U.S. Food and Drug Administration approval for its Guardant360 CDx liquid biopsy test as the companion
As reported on Science Daily, researchers at the University of Michigan have identified a potential new therapeutic approach for aggressive prostate cancers that become resistant
GPRC5D-Targeting Approach Positions Company to Expand Post-BCMA Treatment Options As reported on Fierce BioTech, Bristol Myers Squibb announced positive results from its pivotal Quintessential trial
Editor’s Note: We’re honored to share the following article from our friends at the Courageous Parents Network. To see this article in its original format,
Editor’s Note: Patient Worthy is honored to share this article from Rareatives, originally written by our friend Jessica Lynn. To see the article in its
Editor’s Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea, originally written by Bill Phillips, a colorectal cancer
A single genetic change can have dramatically different effects from one person to the next. That is the reality for people living with PTEN hamartoma
As reported on QZ, the U.S. Food and Drug Administration has approved a new indication for Eli Lilly’s tirzepatide (Mounjaro), allowing the therapy to be
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Living with myelofibrosis can mean navigating more than the disease itself. Complications like anemia can add another layer to a person’s experience and may influence how they feel from day to day.
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