Chronic diseases perplex doctors, while leaving patients mysteriously ill Meghan O’Rourke, the author of the best-selling book Invisible Kingdom, recently released an excerpt from this
As reported on MedPage Today, an experimental immunotherapy called gotistobart helped patients with advanced squamous non-small cell lung cancer (NSCLC) live longer than standard chemotherapy
Editor’s Note: Patient Worthy is honored to share this essay from Carrie Ostrea. I have been fortunate to share my rare disease daughter’s story for
A Q&A with Robert Groysman, MD, on why standard tests can miss long COVID—and how individualized care may help patients break the cycle When the
The Wall Street Journal opinion editors recently published an article a liquid biopsy test called Galleri, prior to an upcoming FDA review. Key Trial Results
For most of my life, I knew something was wrong with my body. I just never had a name for it. When I was around
“For people living with a progressive rare disease, time is measured differently. Research and clinical trials can take years while patients continue to lose strength
For World CML Day (September 22nd), Nancie Steinberg reflects on living with chronic myeloid leukemia and how a cancer diagnosis ultimately led her from patient
Editor’s Note: Patient Worthy is honored to share this article from our friends at the Aplastic Anemia and MDS International Foundation. To see the article
One-time treatment provides a new option for pediatric patients with a rare, progressive genetic disorder As announced in a recent press release, the U.S. Food
I want to share this to give some ideas I have found that help me move through difficult days with more steadiness and self compassion,
As reported on Radiology Business, the American Society for Radiation Oncology (ASTRO) has released its inaugural clinical practice guideline dedicated to the use of radiation
As reported on Healio, the U.S. Food and Drug Administration has approved finerenone (Kerendia; Bayer) for adults with chronic kidney disease (CKD) associated with type
To start, a few words about the immune system: The immune system is comprised of cells, molecules, and biochemicals, and works to maintain human health.
Editor’s Note: Patient Worthy is honored to share this article, originally written by Linda Chase of Able Hire. Accessible travel planning means building a trip
For new caregivers supporting a parent, partner, or relative at home, the days can turn into an unbroken string of decisions, vigilance, and worry. The
When I was 39 years old, my life changed in an instant. I was a father of two young children, my daughter was six and
As reported on News-Medical, an experimental treatment for idiopathic pulmonary fibrosis (IPF), rentosertib, was associated with shifts toward younger biological age profiles across multiple protein-based
Getting a diagnosis of hepatocellular carcinoma can involve several steps. 🩺
Blood tests can provide information about liver function and markers such as AFP, while imaging—including ultrasound, CT, or MRI—can help identify and evaluate tumors in the liver. In some cases, a biopsy may be needed to examine liver tissue more closely.
Understanding what each test can reveal is an important part of understanding the diagnosis and determining the next steps in care. 💛
Click the link below to share your story today -
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#HepatocellularCarcinoma #livercancer #PatientWorthy
Hereditary angioedema (HAE) is a rare genetic condition that can cause sudden, recurring episodes of swelling in different areas of the body.
Because attacks can be unpredictable and symptoms may vary from person to person, living with HAE can mean navigating uncertainty that others may not always see.
By continuing to talk about HAE, we can help build greater understanding, awareness, and support for those impacted. If you've been diagnosed with HAE and would like to share your story, click the link in our bio to learn more!
#rarediseaseoftheweek #HereditaryAngioedema #HAE #raredisease #RareDiseaseAwareness #PatientWorthy
Nobody grows up thinking they'll become an expert in medical terminology, insurance appeals, specialist appointments, and advocating for themselves. Yet here we are.
💙 "Being rare isn't always easy, but it does make for an interesting story."
If your journey were a book, what would you name the current chapter?
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