The US Food and Drug Administration (FDA) has approved Idvynso, a groundbreaking two-drug single-tablet regimen combining 100 mg doravirine and 0.25 mg islatravir, for treating
My story began very suddenly on May 4th, 2025, when I was home from graduate school visiting my family. It had been a great day,
Glioblastoma multiforme (GBM) is the most common malignant brain tumor in adults and remains one of the most difficult cancers to treat. Characterized by aggressive
WebMD published a story about a young woman, Maddie, who had spent nine years in wheelchair confinement resulting from a rare metabolic disease related to
Health Canada has officially approved Cysklar® (cysteamine ophthalmic solution) 0.44%, marking a significant breakthrough for Canadians living with cystinosis. According to BusinessWire.com, the approval enables
Putting feelings into words does more than help you reflect. Brain imaging research shows it can shift activity inside emotional circuits. If you are someone
Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it.
As reported by Business Wire, Enanta Pharmaceuticals has initiated its first clinical study of EDP-978, a novel oral inhibitor of the KIT receptor tyrosine kinase
Editor’s Note: Patient Worthy is honored to share this article from our friend Jessica Lynn. To see the article in its original format, please click
Cancer cachexia represents one of oncology’s most overlooked catastrophes. Patients waste away, lose appetite, and deteriorate despite receiving chemotherapy, yet few treatment options exist to
I had learned that the many twists and turns on our rare disease path were similar to the families we met Originally published on May 11, 2022,
I was born in Long Island, New York, and raised in Southern California, where I grew up surrounded by sunshine and the beauty of the
Diabetic macular edema represents a silent threat to working professionals across America. The condition, which causes fluid accumulation in the macula, the eye’s central focusing
As reported on PharmaBiz, ModeX Therapeutics, a clinical-stage biotechnology company within OPKO Health, has begun dosing patients in a first-in-human clinical trial evaluating MDX2003, a
A New Shield for the Blood Supply: Grifols Earns FDA Approval for Malaria Test Grifols has reached a significant milestone in transfusion medicine with the
The aesthetic skincare market has long overlooked a fundamental principle: skin preparation matters as much as the procedure itself. According to PharmaBiz.com, Galderma’s Alastin brand
As reported on Business Wire, Motif Neurotech has received clearance from the U.S. Food and Drug Administration (FDA) to initiate its first clinical study evaluating
For patients with rare diseases and the caregivers in healthcare who support them, skin changes often become a daily friction point rather than a simple
🌍Global Accessibility Awareness Day
Today, we recognize the importance of creating a world where everyone can participate fully—online and beyond.
Digital accessibility ensures that websites, apps, and technology are usable for people of all abilities. From captions and screen readers to inclusive design, accessibility isn’t just a feature—it’s a necessity.
✨ When we design with accessibility in mind, we create better experiences for everyone.
Let’s continue to learn, advocate, and build a more inclusive, accessible future—together.
#GAAD #PatientWorthy #InclusiveDesign #DigitalInclusion #GlobalAccessibilityAwarenessDay
Learning your limits can be one of the most difficult — and most important — parts of navigating life with a chronic or rare illness. Many people spend time figuring out what triggers symptoms, how to pace themselves, and when their body is asking for rest before reaching complete exhaustion.
Over time, listening to those signals and adjusting accordingly can become an important part of managing daily life and protecting overall well-being.
#raredisease #rarediseaseawareness #chronicillness #chronicillness #chronicillnessawareness #PatientWorthy
Friday, May 29th ZOOM United Porphyrias AssociationImportant update 👀
Our Young AHP ConnectUp with Hailey Brionez has been rescheduled to:
🗓 May 29
⏰ 6 PM ET
This is a supportive space for teens and young adults living with Acute Hepatic Porphyria (AHP), including AIP, HCP, VP, and ADP, to connect, share experiences, and feel understood by others navigating similar journeys.
You are not alone 🫂
👉 Please register to receive the Zoom link:
www.porphyria.org/events/ahpyouth
We hope to see you there ✨
#porphyria #AHP #raredisease #youngadults #patientcommunity
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