Website: https://fabrynetwork.org/youngadults Instagram Young Adults: @fabryyoungadults Instagram FIN: @fabryintnetwork 11 June 2026 - FIN launches international Young Adults Guidebook created by and for young adults living with Fabry disease. Young…
The questions I get asked the most are “How did it start?” “Did you have any symptoms?” “How did they find it?” For five years before my life-altering diagnosis, my…
Editor's Note: This article was originally written and shared with us by Nick Leon of Naked Eye, and is shared here with gratitude. To see the article in its original…
Editor's Note: This story was submitted to us by Angelina Olivera, the mom of a 14-year-old with Duchenne muscular dystrophy, and the sister of two brothers who died from Duchenne…
The human body is governed by an ancient, rapid-response defense system. When an invader attacks, the innate immune system rushes to the front lines like firefighters to a blaze. But…
Editor's Note: This story was originally written by Julia Alessandrine—a survivor of Hodgkins Lymphoma—and shared with us by our friends at Elephants & Tea. To see the article in its…
Editor's Note: This article was submitted to us by Regina Portnoy. A clinical trial may be remembered for a breakthrough treatment, a new therapy, or a headline-making discovery. But its…
Looking back, the signs were there long before I was diagnosed with lupus. As a child, I struggled with gastrointestinal issues and a variety of symptoms that suggested something wasn't…
Editor's Note: Patient Worthy is honored to present this story, shared with us by our friends at The Mast Cell Disease Society. To see the article in its original format,…
By Dr. Avishek Kumar When someone hears there may finally be a breakthrough for pancreatic cancer, the natural reaction is hope. In clinic, however, I often see what comes next.…
Editor's Note: This article was originally written by Joanne Huff, and shared with us by our friends at the Courageous Parents Network. To see the article in its original format,…
To this day, I still don't remember the car accident that changed my life. It was Thursday, August 8, 2024 — a day like any other. I'd gone to BioFit,…
Editor's Note: This article was originally written and shared with us by Caleigh Haber. This day hits really close to home for me. I was born with Cystic Fibrosis in…
Editor's Note: Patient Worthy is honored to present this story by Heather Doyle, originally published by the United Porphyrias Association. To see the article in its original format, please click…
Editor's Note: This piece, originally written by Kayla DeSonier, was shared with us by our friends at Elephants & Tea. To see the article in its original format, please click…
Editor's Note: This article was shared with us by our friends at the Cure NF2 Foundation, in honor of May 22nd being World NF2 Awareness Day. To see the article…
What is Parkinson’s Disease – known as PD for short? Parkinson’s Disease was first discovered in 1817 by a British doctor named James Parkinson. From observations, he noticed 7 people…
Editor’s Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. She waited an hour and fifteen minutes to see her doctor. When she…
I remember the day I realized something was wrong, as clearly as if it happened this past weekend. It was a beautiful morning in June. I was taking part in…
Editor's Note: Patient Worthy is honored to share this submission from Katie DiLorenzo, SVP, Patient and Pharmacy Services, PANTHERx® Rare. If you’re living with a rare disease or caring for…
Patient Worthy is honored to reprint this selection from The Cancer Dietitian, by Julie Lanford MPH, RD, CSO, LDN. It’s important to know that no single food or nutrient can cause…
I am sharing my journey to give a voice to patients who suffer from extreme poly-pathology and are often left behind by the medical system. I know that my medical…
Editor's Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. In college, a clinician told me I was overdoing it. Then moved…
Editor's Note: Patient Worthy is honored to present this article, shared with us by our friends at the Seena Magowitz Foundation. When doctors diagnosed Michael Fitzpatrick with pancreatic neuroendocrine tumors…
Editor's Note: Patient Worthy is honored to share this story submitted to us by Regina Portnoy, a clinical researcher with over 20 years of experience. Every year, as Mother’s Day…
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