Acute lymphoblastic leukemia
Make-A-Wish Side Effect
Editor’s Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the article, originally written by Natalia
El cáncer de hígado y las comunidades hispana y afrodescendiente en Estados Unidos
- October 13, 2026
Liver Cancer and the Hispanic and Black Communities in the United States
More Than 50 Surgeries and Still Becoming
Roginolisib: What Two New Studies Tell Us—and What They Don’t Yet Show
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Rare Disease
When Nothing Hurts: Why Advocating for Your Own Health Matters
Editor’s Note: The following article was submitted to Patient Worthy by Regina Portnoy. “Nothing hurts. I feel fine. Why would I need to see a
Lung Cancer
Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice
Editor’s Note: Patient Worthy is honored to share this patient story, submitted to us by Shelly Glenn. For most of my career, I worked on
Epilespy
Jon’s Epilepsy-Caregiver Story
Editor’s Note: Patient Worthy is honored to share the following caregiver story, submitted to us by Jon Scheinman of The Epilepsy Foundation. To see the
Acoustic neuroma
Vanessa’s Acoustic Neuroma Story
There are parts of 2024 that I know only through photographs and the stories my sister has told me. In some of the pictures, I
Retinitis pigmentosa
Optogenetic Therapy
As reported on Inside Precision Medicine, a novel optogenetics-based treatment may offer a new path toward restoring some visual function in people with advanced retinitis
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep
October 9th: PANS/PANDAS Awareness Day
Aspire: “ We aspire to improve the lives of children and adults affected by PANS/PANDAS and other immune-related encephalopathies by closing the gap between symptom
X-linked Hypophosphatemia
How One XLH Diagnosis Sparked Conversations Across Three Generations
Editor’s Note: Patient Worthy is pleased to share this story, submitted to us by Connie B. What if one diagnosis could change the way an
Parkinson's Disease
New Research Project Will Explore Why Parkinson’s Affects Women and Men Differently
Two-year University of Arizona study will use human brain-cell models to investigate sex-specific biology and help guide future research and clinical trials. Critical Path Institute
Rare Disease
Genetic Testing: The Future is Here
Genetic testing is now more available than ever before. For those who suspect a genetic disorder, the best route is often through a genetic counselor.
Limb-girdle muscular dystrophy
Body Bound by Earth, Mind Master of the Cosmos: My Journey with LGMD2R
My name is A. Sabesan. I am 25 years old, living in Chennai, Tamil Nadu, India. Up until the age of 18, my life was
Hemophilia A
FDA Delays Decision on Novo’s Hemophilia A Therapy Over Manufacturing Concerns
As reported on BioSpace, the FDA has extended its review of Novo’s investigational hemophilia A therapy denecimig due to manufacturing-related concerns, although the company says
Bladder cancer
Bladder Cancer May Be Getting Easier to Detect
As reported on Inside Precision Medicine, researchers at Stanford Medicine and the VA Palo Alto Health Care System have created a new urine test called
Rare Disease
Seen, Heard, and Believed: Why the Patient Voice Matters
Editor’s Note: The following story was submitted to us by Pam Mason, Patient Speaker & Advocate. If you looked at a picture of me, you
Colorectal cancer
Becky’s Journey with Metastatic Colon Cancer
I’ve survived Stage 4 colon cancer for about 10 years. I went to the doctor for a routine colonoscopy. They said I had a long
Metabolic dysfunction-associated steatohepatitis
Wegovy Linked to Normal Liver Fat Levels in Small Analysis of Adults With Obesity
As reported on Medical Daily, small exploratory analysis suggests that semaglutide, the active ingredient in Wegovy, may substantially reduce liver fat in some adults with
Limb-girdle muscular dystrophy
I Live With LGMD. I Want Patients to Help Shape What Comes Next.
When I was seven, my parents were trying to understand why I was becoming ill. I spent time in hospitals and underwent painful muscle biopsies.
Rare Disease
My Big Sister
Editor’s Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr.
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UPCOMING EVENTS
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Movement doesn’t have to be intense to make a difference.
For people living with metabolic dysfunction-associated steatohepatitis (MASH), finding ways to move that feel manageable can be an important part of supporting liver health.
Whether it’s a short walk, gentle stretching, swimming, or simply moving a little more throughout the day, small steps can add up over time.
The goal isn’t perfection or pushing through exhaustion. It’s finding movement that works for your body, your energy levels, and your lifestyle.
If you'd like to share your story, click the link in our bio.
#MASH #MASHAwareness #LiverHealth #ChronicIllness #PatientWorthy #ShareYourStory
Breast cancer is not a one-size-fits-all diagnosis.
Every diagnosis is unique, with different characteristics and treatment considerations. Understanding these differences helps raise awareness, encourage informed conversations, and support those affected.
This Breast Cancer Awareness Month, we're highlighting the importance of education and recognizing every patient's unique experience.
Swipe through to learn more! If you'd like to share your story with breast cancer, click here: ow.ly/iRLV50ZWYxR or the link in our bio!
#BreastCancerAwareness #breastcancereducation #breasthealth #PatientAdvocacy #shareyourstory #PatientWorthy
💗 Thank you, Candiss, for sharing your breast cancer journey with the Patient Worthy community. Your courage, strength, and willingness to tell your story help others feel seen, supported, and less alone as they navigate their own experiences.
Every story has the power to inspire hope, foster connection, and remind others that they are not alone.
🎀 Have a story to share? We'd love to hear from you.
👉 Click the link below to share your journey.
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