A recent research article in ScienceDirect.com details a breakthrough in visualizing the rapid, complex movements of proteins using high-speed atomic force microscopy (HS-AFM). This cutting-edge imaging technology allows scientists to…
A recent case report has brought attention to a rare but potentially life-threatening cause of heart attack: spontaneous coronary artery dissection (SCAD) in a young woman without classic risk factors…
A recently published case report has shed light on an uncommon cause of abdominal pain in adults: small bowel intussusception due to a benign tumor known as a lipoma. As…
A groundbreaking clinical milestone has been reached in gastroenterology with the publication of a first-in-human study evaluating a novel spray gel for the treatment of ulcers following endoscopic submucosal dissection…
In a remarkable stride toward personalized cancer treatment, scientists have developed a groundbreaking test designed to predict whether individual patients will respond to chemotherapy or develop resistance. According to Bioengineering.com,…
Editor's Note: This article was originally published by Patient Worthy on 6/7/2017, and is being republished due to current NASH/MASH awareness efforts. If you would like to share your story…
I often find myself initially stuck on where to start when telling our story. I say “our” because that’s the truth of this rare disease journey: everyone who touches Natalie’s…
In a moving story of resilience and hope, a 10-year-old patient is embracing a new lease on life after receiving a heart transplant, seen as a medical miracle that has…
The world of healthcare is changing rapidly, and technology is at the heart of its evolution. The latest innovation making waves is an AI-powered medical receptionist that’s not only efficient…
In a remarkable demonstration of medical innovation, a Florida-based surgeon recently performed a robotic surgery on a patient located over 7,000 miles away. This groundbreaking procedure highlights the immense potential…
Cure Rare Disease (CRD), a pioneering nonprofit biotechnology organization, has announced the addition of new scientific and strategic leaders, marking a significant step forward in its mission to develop therapies…
In the vast world of podcasts, “Wait, How Do You Spell That?” stands out as a beacon for patients, families, and advocates navigating the complex, often isolating journey of rare…
A recent article from PMLiVE underscores the critical role of collaboration in advancing innovation and improving access to treatments for rare diseases. With over 7,000 rare diseases affecting millions of…
A recent article from The Economic Times spotlights the intriguing case of a young boy from South India who repeatedly fainted during baths—a perplexing pattern that led to the identification…
A recent article published in the Orphanet Journal of Rare Diseases highlights the launch and goals of RARE-Impact, a new European project designed to enhance the diagnosis, care, and overall…
Launched in May 2015, Patient Worthy set out with a bold mission: to amplify the voices of rare disease and chronic illness patients, and to connect and inform a community…
This Father’s Day, Patient Worthy honors the strength, resilience, and unwavering dedication of fathers of children with rare diseases. Their journeys inspire us all and remind us of the vital…
A recent study has revealed that vitamin B3 could offer hope for patients suffering from a rare genetic disorder that causes accelerated aging. As reported by ScienceBlog, researchers found that…
My symptoms began in 2001 and within 6 months I went from functionally uncomfortable to disabled to the point that I could barely lift myself out of bed because more…
Pearl Jam front-man Eddie Vedder takes center stage in the new documentary “Matter of Time,” offering fans and viewers a rare, intimate glimpse into his life as both an artist…
The FDA is taking significant steps to update and streamline its regulatory approach to rare diseases, according to a recent article from BioCentury.com. Recognizing the unique challenges faced by patients,…
Living with a rare or chronic illness is a journey marked by uncertainty, resilience, and the power of community. For the last 10 years at Patient Worthy, individuals from all…
Alnylam Pharmaceuticals has launched a unique promotional campaign for Givlaari, its treatment for acute hepatic porphyria (AHP), that swaps the usual clinical narratives for something more artistic: dance. As reported…
In a significant stride for global health, the United Nations recently adopted a historic resolution dedicated to rare diseases. This move, as reported by Medics 4 Rare Diseases, celebrated by…
Many people with rare diseases struggle to access personalized therapies simply because they lack a confirmed genetic diagnosis. This barrier blocks access to targeted treatments and clinical trials, leaving families…
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