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,…
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: 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…
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…
Editor's Note: Patient Worthy is honored to share this article from our friend Jessica Lynn. To see the article in its original format, please click here. When five-year-old Bennett hit…
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…
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…
Patients living with chronic or rare diseases and the caregivers coordinating appointments, medications, and daily life often carry a quiet question alongside the medical work: what will last beyond the…
Fight. I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside the community. We fight for…
Editor's Note: The following in from author Stephen Policoff, whose book A Ribbon for Your Hair is out today! Introduction When Stephen Policoff’s adopted daughter Anna was four, a freak…
Editor's Note: Patient Worthy is honored to share this caregiver story with you, originally written by Aisling Melton, Parent Champion at Courageous Parents Network. In medicine, baseline is a simple…
Rare Disease Month is deeply personal to our family. Before Pruitt, our youngest son, we had never heard of Ornithine Transcarbamylase (OTC) Deficiency, nor did we truly understand how fragile…
Editor's Note: Patient Worthy is pleased to share this article, submitted to us by George Simpson, who volunteers for the CMT Research Foundation. There are estimated to be between 6,000 and…
In the whirlwind of early motherhood, days blur together in a haze of feedings, diaper changes, and sleepless nights. You’re learning your baby’s every sound, every expression, and trying to…
I’ve learned something brutal over the last few weeks: Most people cannot tolerate the reality of a child nearly dying. So they dilute it. They soften it. They reach for…
Editor's Note: Patient Worthy is proud to share this caregiver story submitted to us by Missy Williams. Nine years later, I can still picture the moment I received the news…
“We’re going to Disney World!” That's what all the winners say, right? When the big game is over and the team has won the championship, the winners say, for a…
Editor's Note: We're proud to be the first to share this story by Blair Young Whitworth, a Parent Champion of the Courageous Parents Network. There were so many anxious years…
Editor's Note: Patient Worthy is proud to bring you this story from our friends at the Glanzmann Research Foundation. To see the article in its original format, please click here.…
Editor's Note: This opinion piece was originally written by Kim Higbee. The opinions expressed in this article may not be a reflection of Patient Worthy, its employees, or any of…
I’ve spoken regularly with family members and friends about my sons and their diagnosis and about our real-world struggles. I’ve advocated for them at our local pediatrician’s office, educated our…
I am a caregiver to my wonderful husband, Bryan. Our journey began at a rapid pace after a trip to the ER and a CT scan revealed he had stage…
Acknowledgement: Patient Worthy is honored to share this story from our friends at GACI Global. To see the article in its original format, please click here. Born on World Heart…
Editor's Note: Patient Worthy is proud to share this caregiver story from our friends at Courageous Parents. — A parent’s perspective by Maria Hopfgarten, Courageous Parent Network Parent Champion. When…
When you become a parent, your life changes in an instant. You’re no longer just living for yourself—you’re living for your child. A fierce and unwavering instinct takes over, a…
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