Dravet Syndrome
The Dravet Syndrome Foundation of Spain’s Annual Meeting 2026
The Dravet Syndrome Foundation of Spain hosted its 2026 Annual Family Meeting on March 20 at the Rafaela Ybarra School in Madrid, bringing together roughly 100
Bridging Nutrition Science and Patient Care: ANA and Jazz Pharmaceuticals Launch Cardiovascular Health Initiative
The Mentor She Wished She Had – How Elizabeth Became a Lifeline for EB Families
How to Build a Lasting Legacy While Living with Chronic Illness
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Hunter Syndrome
Breaking Through the Rare Disease Barrier: FDA’s Historic Approval of Denali’s Hunter Syndrome Treatment
The pharmaceutical industry celebrates a significant victory for rare disease patients as the Food and Drug Administration approved Denali Therapeutics’ groundbreaking enzyme replacement therapy for
Obesity
FDA clears higher‑dose Wegovy to support long‑term weight management
As reported on PharmaBiz, the US Food and Drug Administration (FDA) has approved Novo Nordisk’s higher‑dose formulation of semaglutide, Wegovy HD (7.2 mg once weekly),
Multiple Myeloma
Finding My Way Forward: Living with Multiple Myeloma
I used to be really active: swimming, Tai Chi every week, practicing yoga. So, when I first felt persistent rib and back pain in late
Primary Biliary Cholangitis
Lynavoy Achieves FDA Approval: A Breakthrough Treatment for Cholestatic Pruritus in Primary Biliary Cholangitis
GSK has announced a significant advancement in liver disease treatment with FDA approval of Lynavoy (linerixibat), marking the first medication specifically approved in the United
Heart disease
Choosing to Be Me: Redefining My Life with Rheumatic Heart Disease
My diagnosis of rheumatic heart disease came on suddenly. I remember being 12, sitting at the doctor’s office, and was told that I have a
Huntington's disease
Major Breakthrough: Discovery of a Pathway that Allows Brain Cells to Move Toxic Material in Huntington’s Disease
Researchers at Florida Atlantic University (FAU) have identified a cellular pathway that allows brain cells to share proteins and other toxic material. The study was
Narcolepsy
Lupin Receives FDA Approval for Pitolisant: A Novel Solution for Narcolepsy Management
Lupin, a globally recognized pharmaceutical company, has achieved a significant regulatory milestone with the receipt of tentative FDA approval for Pitolisant tablets in strengths of
Diabetes Type 2
Can Your Morning Coffee Really Help Prevent Type 2 Diabetes?
Editor’s Note: Patient Worthy is honored to present this article, shared with us by our friends at the Steatotic Liver Foundation (formerly the Fatty Liver
Huntington's disease
Heather and Nathan’s Journey with Huntington’s Disease
Fight. I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside
Ehlers-Danlos Syndrome
My Journey with Ehlers-Danlos Syndrome
My name is Amanda. I was diagnosed with a genetic connective tissue disease called Hypermobile Ehlers-Danlos Syndrome (h-EDS) about four years ago. However, the diagnosis
Amyloidosis
Faye’s Journey with Amyloidosis
My name is Faye. I’m blessed to be the wife of the love of my life, Brad, and the proud mom of two extraordinary boys
Obesity
Setmelanotide Shows Limited Efficacy in Heterozygous Obesity Gene Carriers
A major clinical trial has revealed disappointing results for setmelanotide, a promising obesity treatment, when used in patients carrying single genetic mutations associated with weight
Cancer
Illumina and Labcorp Deepen Collaboration to Broaden Access to Precision Oncology Testing
As reported on PharmaBiz, Illumina and Labcorp have announced an expanded strategic collaboration aimed at accelerating precision oncology by applying next-generation sequencing (NGS) technologies more
Ehlers-Danlos Syndrome
Opinion Piece: Insurance Abuse
Editor’s Note: The views, thoughts, and opinions expressed in this article belong solely to the author and do not necessarily reflect the position of Patient
non-small cell lung cancer
Eftilagimod Alfa Setback: Immutep Halts Landmark Lung Cancer Trial Following Futility Analysis
Immutep Limited has announced the discontinuation of TACTI-004, a pivotal Phase III clinical trial investigating eftilagimod alfa (efti) as a first-line treatment for advanced non-small
non-small cell lung cancer
Dizal’s Zegfrovy Delivers Phase 3 Breakthrough in EGFR Exon 20–Mutant NSCLC
As reported on FiercePharma, China-based biotech Dizal Pharmaceutical has reported a pivotal phase 3 success for its oral EGFR inhibitor Zegfrovy (sunvozertinib), marking a potential
Renal cancer
The Luck of the Irish: A Parable of Inheritance, Illness, and Hope
Editor’s Note: The following article was originally written by Kelly Curtin-Hallinan, and shared with us by our friends at Elephants & Tea. This past St.
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April is Stress Awareness Month 💙
Stress looks different for everyone, and so does healing. Small steps, taken consistently, can make a meaningful difference.
Let’s check in on ourselves and each other, reduce stigma, and prioritize wellbeing—this month and beyond.
#StressAwarenessMonth #MentalHealthMatters #SelfCare #PatientWorthy
Thank you Arelis for sharing your journey with vertical sleeve gastrectomy (VSG).
"I’m Arelis—most people call me Reli. I had VSG on June 23rd, 2020.
As a first-generation Dominican American, food has always been a big part of my culture and my life. By the time I got to college, I had tried just about everything to lose weight—gyms, bootcamps, pills, programs, even Dominican home remedies.
By 2018, I was around 275 pounds. I had been diagnosed with PCOS, experienced a few miscarriages, was dealing with chronic back pain, and had high cholesterol. That’s when I realized it was time to make a real change—for me.
Choosing weight loss surgery has truly changed my life—not just physically, but mentally and emotionally as well. I’ve maintained a 135-pound weight loss, which has helped me better manage my back pain and improve my cholesterol without needing medication.
More importantly, this journey has given me a completely new mindset, meaningful connections, and a version of myself I’m really proud of.
I didn’t just lose weight—I found myself."
#StoryShare #VSG #WeightLossSurgery #PatientWorthy #SleeveGastrectomy #WeightLossJourney
On World Autism Day, we celebrate minds that experience the world in beautifully different ways. Autism reminds us that there is no single right way to think, communicate, or connect. When we choose acceptance, practice understanding, and honor uniqueness, we create a world where everyone belongs just as they are. #autism #autismawareness #autismacceptance #inclusionmatters #WorldAutismAwarenessDay #CelebrateDifferences #PatientWorthy
