Connor’s Leukodystrophy Story
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…
Continue Reading
Connor’s Leukodystrophy Story
In Rare Disease Care, Coordination Should Be Common
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…
Continue Reading
In Rare Disease Care, Coordination Should Be Common
Nutrition and Cancer 101 – The Basics
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…
Continue Reading
Nutrition and Cancer 101 – The Basics
Fighting for Himself and Others: Wojciech’s Battle Against Crohn’s Disease and More
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…
Continue Reading
Fighting for Himself and Others: Wojciech’s Battle Against Crohn’s Disease and More
Dismissal, Derision, and Misdiagnosis: Olga’s Lupus Story
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…
Continue Reading
Dismissal, Derision, and Misdiagnosis: Olga’s Lupus Story
After Losing His Mother to Pancreatic Neuroendocrine Tumors, Michael Fitzpatrick Is Now a 26-Year Survivor of the Same Condition
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…
Continue Reading
After Losing His Mother to Pancreatic Neuroendocrine Tumors, Michael Fitzpatrick Is Now a 26-Year Survivor of the Same Condition
Two Mothers. One Trial. Two Different Outcomes: A Mother’s Day Reflection from Clinical Research
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…
Continue Reading
Two Mothers. One Trial. Two Different Outcomes: A Mother’s Day Reflection from Clinical Research
The Timeless Passages of My Mind and Soul
Editor's Note: Patient Worthy is honored to share this patient story from our friends at Elephants & Tea. To see the story in its original format, please click here. This…
Continue Reading
The Timeless Passages of My Mind and Soul
Sir’Savion’s Story
Editor's Note: Patient Worthy is honored to share this article from our friends at the Brighter Hope Foundation. To see the article in its original format, please click here. Sir’Savion…
Continue Reading
Sir’Savion’s Story
Listening to the Quiet Signs: A Twelve-Year Journey to Answers
On January 20, 2014, at 54 years old, I experienced what I casually called an “anxiety numbness event.” My left thumb and index finger went numb, followed by my left…
Continue Reading
Listening to the Quiet Signs: A Twelve-Year Journey to Answers
Against All Odds: Madison’s Victory Against a Hepatic Adenoma
My story began very suddenly on May 4th, 2025, when I was home from graduate school visiting my family. It had been a great day, shopping and enjoying dinner at…
Continue Reading
Against All Odds: Madison’s Victory Against a Hepatic Adenoma
“I Am More Than the Person in the Bed” – Kristian’s Message to the World
Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it. When they picture me, they…
Continue Reading
“I Am More Than the Person in the Bed” – Kristian’s Message to the World
Jimi’s Fight Against Bladder Cancer
I was born in Long Island, New York, and raised in Southern California, where I grew up surrounded by sunshine and the beauty of the ocean. For the past 14…
Continue Reading
Jimi’s Fight Against Bladder Cancer
How to Transform Your Skin with Simple Natural Care Habits
For patients with rare diseases and the caregivers in healthcare who support them, skin changes often become a daily friction point rather than a simple cosmetic concern. The core tension…
Continue Reading
How to Transform Your Skin with Simple Natural Care Habits
Awareness Isn’t the Hard Part — What 18 Years in the Moebius Syndrome Community Has Taught Me
For nearly two decades, I’ve been building and maintaining a global online community for individuals and families affected by Moebius syndrome, a rare neurological condition that most people have never…
Continue Reading
Awareness Isn’t the Hard Part — What 18 Years in the Moebius Syndrome Community Has Taught Me
Choosing Hope
Editor's Note: Patient Worthy is honored to share this piece from our friends at Elephants & Tea, originally written by Katie Newbaum. To see the article in its original format,…
Continue Reading
Choosing Hope
Maha & Baba: A Caregiver’s Journey Through Glioblastoma
My name is Maha, and I had the privilege of being my father’s — my Baba’s — caregiver. I’ll be blunt; it was tough. When you live in a developing…
Continue Reading
Maha & Baba: A Caregiver’s Journey Through Glioblastoma
What We Carry With Us: The Lesson of the Quilt
Editor's Note: Patient Worthy is honored to share this submission by Regina Portnoy, a clinical researcher with 20 years of experience working alongside patients. Many years ago, when I was…
Continue Reading
What We Carry With Us: The Lesson of the Quilt
Katrina’s Journey with Metastatic Breast Cancer
I’ve always been an overachiever – someone who puts their mind to something and delivers more than was expected, someone who strives for greatness. I never wanted to be an…
Continue Reading
Katrina’s Journey with Metastatic Breast Cancer
Simple Daily Habits to Boost Your Whole-Body Health and Well-Being
Editor's Note: Patient Worthy is honored to share this article, originally submitted by Camille Johnson. For chronic disease patients living with rare conditions and long-term symptoms, whole-body health challenges can…
Continue Reading
Simple Daily Habits to Boost Your Whole-Body Health and Well-Being
What Happens When a Patient Is Living with Multiple Rare Diseases?
I have battled several autoimmune and neurological conditions that are triggered by food and other factors for over 50 years. It took most of my life to reach not one,…
Continue Reading
What Happens When a Patient Is Living with Multiple Rare Diseases?
Can We Fix This Broken Heart? – Part 5
Editor's Note: Patient Worthy is pleased to share the final part in a series of excerpts by Dana Langston. Chapter 36: Holding the Line Knowing the surgery won't happen until…
Continue Reading
Can We Fix This Broken Heart? – Part 5
Can We Fix This Broken Heart? – Part 4
Editor's Note: Patient Worthy is pleased to share part 4 of 5 in a series of excerpts written by Dana Langston. Part 7: Legacy & Final Gratitude Chapter 25: The…
Continue Reading
Can We Fix This Broken Heart? – Part 4
Can We Fix This Broken Heart? – Part 3
Editor's Note: Patient Worthy is proud to bring you part 3 of 5 in a series of excerpts written by Dana Langston. Part 3: The Mental Battlefield Chapter 12: Doing…
Continue Reading
Can We Fix This Broken Heart? – Part 3
Can We Fix This Broken Heart? – Part 2
Editor's Note: This is the second part in a series of excerpts written by Dana Langston. Chapter 4: The Internal Shift We are living in the "waiting room" now. The…
Continue Reading
Can We Fix This Broken Heart? – Part 2
- 1
- 2
- 3
- 4
- …
- 88
- Go to the next page
