RASONQUE Represents a Watershed Moment for a Disease That Has Resisted Treatment Since RAS Was Discovered as a Cancer-Causing Gene Pancreatic cancer is among the
A Rare Disease Gets Its First FDA-Approved Medicine—And It Works Differently Than Anything Available Before Imagine your immune system getting the signals completely wrong. Instead
Twenty-plus pills a day. Two biologic injections a month, two more every week. That’s my baseline just to function like a “normie” human and keep
Editor’s Note: Patient Worthy is honored to share this article, originally written by Danviel Villarte . Danviel is part of the Outreach Team at Receptive,
Editor’s Note: Patient Worthy is honored to share this story, submitted to us by Richard Poulin III. Late one night, a seemingly ordinary Facebook post
Editor’s Note: Patient Worthy is honored to share this article, originally written by Renzo Luzzatti, President and CEO of US-Rx Care. The White House recently
As reported on The Hill, Vitruvias Therapeutics has initiated a voluntary nationwide recall of a specific lot of thyroid medication after testing indicated the tablets
As reported on BioSpace, Vera Therapeutics’ newly approved IgA nephropathy (IgAN) treatment, Trutakna, is showing early evidence that it may help preserve kidney function, a
As reported on GlobeNewswire, a newly published set of expert consensus recommendations is seeking to improve the care experience for children diagnosed with neuroblastoma and
As reported on Newsweek, a novel experimental treatment for Guillain-Barré syndrome (GBS) may represent a major advance for patients living with the rare neurological disorder.
As reported on CNN, the U.S. Food and Drug Administration (FDA) has approved the first gene therapy designed to treat a rare inherited form of
As reported on MedicalXpress, researchers have reported that urolithin A, a compound derived from gut metabolism and available as an over-the-counter supplement, enhanced the effectiveness
Today the Tin Soldier Disease has a treatment. A clinical trial showed a 90% reduction in new bone development in adults with FOP. After Decades
Researchers Discover That One of Medicine’s Most Common Lab Tests May Warn of Rare But Serious Side Effects Weeks Before They Occur As reported on
As reported on Fierce BioTech, the U.S. Food and Drug Administration has granted approval to Lantheus’ positron emission tomography (PET) imaging agent Tauklarify (MK-6240), expanding
Scientists Discover Multiple Pathways Through Which an Ancient Fruit Protects the Cardiovascular System For centuries, pomegranates have held a special place in Middle Eastern and
Living with dystonia and other movement disorders means navigating far more than muscle spasms or abnormal postures—and if have dystonia, you already know this. As patients,
The Basic Problem: Why One Bad Gene Can Cause Big Trouble Imagine your body as a giant factory. Like any factory, it needs quality control—machines
Akathisia can affect far more than the ability to sit still. The intense inner restlessness and constant need to move can interfere with sleep, concentration, daily activities, and overall quality of life. It may occur with certain medications or medical and neurological conditions. Raising awareness helps bring greater understanding to a symptom that can be difficult to see—and even harder to explain.
#rarewordoftheweek #raredisease #rarediseaseawareness #PatientWorthy
Life isn’t made up of milestones alone. Sometimes, it’s the ordinary moments that quietly become the ones we treasure most. 🤍
✿ Sharing a meal with family
☕️ Enjoying a quiet morning with coffee or tea
🎬 Watching a favorite movie
☺️ Laughing with friends
☀️ Spending time outside
🎨 Getting lost in a hobby you enjoy
✨ Feeling present in the moment
The little moments may not always seem significant while they’re happening, but one day, you may look back and realize they were part of the memories that mattered most.
#OrdinaryMoments #LittleThings #EverydayJoy #PatientWorthy
Guillain-Barré syndrome can begin with symptoms that may seem subtle, such as tingling or weakness, but the condition can progress quickly. Because GBS affects the peripheral nerves, symptoms can spread and, in severe cases, lead to significant weakness, paralysis, or breathing difficulties.
The exact cause isn’t fully understood, but GBS often develops days or weeks after an infection, when the immune system mistakenly attacks the body’s nerves instead of only targeting harmful invaders.
Recognizing symptoms and seeking medical attention when they are rapidly progressing can be especially important. Awareness starts with understanding what the body may be trying to tell us.
Click the link below to share your story with us!
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#GuillainBarreSyndrome #GBS #RareDiseaseAwareness #PatientWorthy
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