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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.

Rare Disease

FDA Clears First Expandable Heart Valve for Pediatric Patients

As reported on Becker’s Hospital Review, the FDA has approved a first-of-its-kind pulmonary heart valve that can be enlarged after implantation, potentially allowing the device

Cancer

Galleri Moves Closer to FDA Decision as Evidence on Multi-Cancer Blood Testing Evolves

As reported on Becker’s Hospital Review, an FDA advisory committee has backed Grail’s Galleri blood test, bringing the U.S. closer to potentially having its first