Some Dialysis Humor, Part 1
Editor's Note: This is part 1 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles' Chronic Kidney Disease (CKD). Hold…
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Some Dialysis Humor, Part 1
An Interview with Allyson, a Congenital Adrenal Hyperplasia Patient
Can you take me back to when you first became aware that you had a health condition as a child. Did you overhear the adults in your life speaking about…
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An Interview with Allyson, a Congenital Adrenal Hyperplasia Patient
A Doctor-Patient Interview on Ovarian Cancer
Editor's Note: Patient Worthy is honored to share this interview, featuring Kate, an ovarian cancer survivor, and Dr. Premal Thaker, M.D. “There is fear, and there are hard days, but…
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A Doctor-Patient Interview on Ovarian Cancer
Refuse to Disappear
Editor's Note: Patient Worthy is honored to share this article from our friend Abigail Johnston, originally published on her blog No Half Measures. To see the article in its original…
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Refuse to Disappear
Authentic Data is Becoming an Asset Class
Our friends and contributors at the TREND Community have provided us with another enlightening article, this time about high-quality human-generated data becoming a scarce and valuable asset as AI companies…
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Authentic Data is Becoming an Asset Class
Filling a Critical Gap: How TAF Removes Financial Barriers to Treatment
Editor's Note: Patient Worthy is proud and honored to share this article, provided by our friends at The Assistance Fund. Every year, thousands of families receive a rare disease diagnosis.…
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Filling a Critical Gap: How TAF Removes Financial Barriers to Treatment
“I Won’t Let This Define Me.”
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea, originally written by Amy Hoffmann — a survivor of triple-negative breast cancer. To…
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“I Won’t Let This Define Me.”
The Future of Disease Understanding Starts with Listening
Editor's Note: Patient Worthy is honored to share this article, provided by our friends at the TREND Community. To see the article in its original format, please click here. Healthcare…
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The Future of Disease Understanding Starts with Listening
PATIENT INPUT NEEDED: Pituitary Adenoma vs. PitNET Nomenclature Change
Editor's Note: This article is brought to you by our friends at the Acromegaly Community, and shared with our audience at their request. To learn more about acromegaly, please visit…
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PATIENT INPUT NEEDED: Pituitary Adenoma vs. PitNET Nomenclature Change
Les’ Journey with Cardiomyopathy
My name is Les Howard, and I am living with hypertrophic obstructive cardiomyopathy (HCM). Looking back, I believe I may have lived with HCM for most of my life without knowing…
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Les’ Journey with Cardiomyopathy
Supporting Siblings Through Loss: Remembering My Sister Heidi
Editor's Note: This article was shared with us by our friends at the Courageous Parents Network. To see the article in its original format, please click here. My older sister…
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Supporting Siblings Through Loss: Remembering My Sister Heidi
Hereditary Cancer Risk Is Harder to Detect When Family History Crosses Borders
I grew up believing health was something you could control if you were disciplined enough. In my Chinese immigrant family, my father talked constantly about how fried food and Western…
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Hereditary Cancer Risk Is Harder to Detect When Family History Crosses Borders
Fabry International Network’s Young Adult Guidebook
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…
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Fabry International Network’s Young Adult Guidebook
You Are More Than Your Diagnosis: A Message From a Mom With Multiple Myeloma
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…
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You Are More Than Your Diagnosis: A Message From a Mom With Multiple Myeloma
“Hello, My Name Is”
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…
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“Hello, My Name Is”
Duchenne Families Made the Sacrifices Asked. FDA Withheld the Hope.
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…
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Duchenne Families Made the Sacrifices Asked. FDA Withheld the Hope.
The Child Who Defied the Textbooks
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…
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The Child Who Defied the Textbooks
Dear Cancer, Three Years Have Gone By
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…
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Dear Cancer, Three Years Have Gone By
The Heart Behind Every Clinical Trial
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…
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The Heart Behind Every Clinical Trial
From Denial to Balance: My Journey with Lupus
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…
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From Denial to Balance: My Journey with Lupus
A Systemic Mastocytosis Journey: From Diagnosis to Advocacy
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,…
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A Systemic Mastocytosis Journey: From Diagnosis to Advocacy
Daraxonrasib Is Promising. But Here’s What Pancreatic Cancer Patients Need to Know First
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.…
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Daraxonrasib Is Promising. But Here’s What Pancreatic Cancer Patients Need to Know First
Should vs. Want: Guiding Insights from a Palliative Care Clinician
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,…
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Should vs. Want: Guiding Insights from a Palliative Care Clinician
Hidden for Six Weeks: How My Brain Injury Revealed Itself
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,…
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Hidden for Six Weeks: How My Brain Injury Revealed Itself
International Clinical Trials Day
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…
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International Clinical Trials Day
