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1 month ago | 
patientworthy.com | James Moore
Acknowledgment: This story is sponsored by Alexion Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and valuable information to the rare disease community. A new clinical trial called the DepleTTR-CM study is underway to understand a potential new treatment for transthyretin amyloid cardiomyopathy (ATTR-CM).
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2 months ago | 
patientworthy.com | James Moore
The team at Patient Worthy is excited to announce the official launch of our collaboration with our companion site WHATNEXT.com, a cancer-focused online community and media platform with the goal of centering the stories and experiences of people living with cancer. At the core of WHATNEXT’s mission is the understanding that each patient, while often having shared experiences in common with others, nevertheless has a unique journey through cancer diagnosis and treatment.
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Dec 11, 2024 | 
patientworthy.com | James Moore |Audrey Getman
Written by Audrey GetmanSeptember 25, 2020: The day I was diagnosed with myasthenia gravis (MG). One month prior: I was in the emergency room (ER) after experiencing a worsening of facial weakness symptoms over the course of about six weeks. The ER providers thought I was having an aneurysm or a stroke, so they performed a diagnostic MRI, which resulted in no diagnosis. The MRI ruled out other serious conditions but didn’t answer the question of what was causing the weakness.
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Dec 10, 2024 | 
patientworthy.com | Bill Clark |James Moore
Written by Bill ClarkPart 2 – Our Journey from Liver Failure to TransplantContinued from Part 1“A new liver.”That was Becky’s answer pretty much every morning from her ICU bed when the medical team doing rounds asked if there was anything she needed. It was true. My wife needed a healthy liver to survive. That was why we were there. We had come to the University of Texas Southwestern (UTSW) hospital in Dallas to find out if Becky was a candidate for a liver transplant.
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Dec 5, 2024 | 
patientworthy.com | James Moore
Sign Up With a Patient Worthy Account and Share Your Rare Story - OR - Sign Up For Our Patient Panel 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. More Info
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Dec 5, 2024 | 
patientworthy.com | James Moore
Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back with a new episode. On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the Chief Scientific Officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunology.
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Dec 3, 2024 | 
patientworthy.com | James Moore
Jean’s life story is one of extraordinary resilience, a testament to the strength of the human spirit in the face of rare and challenging medical conditions. Born in 1943 in the Scottish town of Oban, Jean has navigated a complex web of health challenges, each one more daunting than the last, but always met with the same unwavering determination. As both a patient and an advocate, she has not only fought for her own well-being but has worked tirelessly to help others who face similar struggles.
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Nov 20, 2024 | 
patientworthy.com | James Moore
According to an announcement from invisionmag.com, the nonprofit organization Prevent Blindness has announced the fifth annual Thyroid Eye Disease Awareness Week, which is being recognized from Nov. 18-24, 2024. Thyroid eye disease, which is also called Graves’ ophthalmopathy or Graves’ eye disease, is an autoimmune disorder resulting in eye swelling and inflammation, as well as the abnormal production of fat and muscle behind the eye.
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Nov 14, 2024 | 
patientworthy.com | James Moore
According to a story from Business Wire, the biopharmaceutical company Astria Therapeutics, Inc., recently announced that its experimental therapy navenibart has earned the US Food and Drug Administration’s Orphan Drug Designation for the treatment for hereditary angioedema (HAE). The decision follows promising findings in an ongoing Phase 1b/2 clinical trial. Initial results demonstrated a reduction in monthly attacks by up to 96% with one or two doses in a six-month period.
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Nov 14, 2024 | 
whatnext.com | James Moore
WHATNEXT partner website Patient Worthy recently shared the results of a recent study, which found that Graves’ disease patients being treated with antithyroid therapies were at an increased risk of developing certain types of cancer, such as pancreatic cancer, biliary tract cancer, thyroid cancer, prostate cancer, and ovarian cancer. Author James Moore writes:At a mean follow-up time of 12.4 years, 9.7% of people in the control group received a cancer diagnosis while 16.5% of patients did.
