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…
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Sir’Savion’s Story
“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
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…
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“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
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…
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What We Carry With Us: The Lesson of the Quilt
Heather and Nathan’s Journey with Huntington’s Disease
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…
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Heather and Nathan’s Journey with Huntington’s Disease
Learning Her Again: A Mother’s Understanding of Baseline
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…
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Learning Her Again: A Mother’s Understanding of Baseline
Pruitt’s Legacy: Raising Awareness of OTC Deficiency and Genetic Testing
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…
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Pruitt’s Legacy: Raising Awareness of OTC Deficiency and Genetic Testing
Can the Cost of Having a Rare Disease Be Calculated?
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…
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Can the Cost of Having a Rare Disease Be Calculated?
Choosing Joy: Erika’s Journey of Raising a Child with Dravet Syndrome, a Rare Form of Epilepsy
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…
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Choosing Joy: Erika’s Journey of Raising a Child with Dravet Syndrome, a Rare Form of Epilepsy
Nick and Rene’s Caregiver Story for Their Daughter with Cystic Fibrosis
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…
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Nick and Rene’s Caregiver Story for Their Daughter with Cystic Fibrosis
Our Achondroplasia Journey: What I Wish I’d Known When My Daughter Was Diagnosed
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…
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Our Achondroplasia Journey: What I Wish I’d Known When My Daughter Was Diagnosed
An Unexpected Liver Transplant Part 4 – The Journey to Disney World
“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…
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An Unexpected Liver Transplant Part 4 – The Journey to Disney World
The Weight of a Decision
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…
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The Weight of a Decision
Vincenzo’s Journey with Glanzmann Thrombasthenia
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.…
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Vincenzo’s Journey with Glanzmann Thrombasthenia
Opinion Piece: When the FDA Says No, Families Like Mine Lose More Than Medicine
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…
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Opinion Piece: When the FDA Says No, Families Like Mine Lose More Than Medicine
Christena’s Caregiver Journey for Two Boys with DMD
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…
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Christena’s Caregiver Journey for Two Boys with DMD
Terri and Bryan’s Fight Against Colon Cancer
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…
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Terri and Bryan’s Fight Against Colon Cancer
Ruben’s GACI Story
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…
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Ruben’s GACI Story
The Gift of Anticipatory Guidance: What Every Family Deserves
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…
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The Gift of Anticipatory Guidance: What Every Family Deserves
Fighting for Dom: A Mother’s Journey Through Rare Disease
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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Fighting for Dom: A Mother’s Journey Through Rare Disease
Urban’s Life with SATB2-Associated Syndrome
Acknowledgement: Patient Worthy is honored to share this story by Erika Stariha, Co-Founder and President of SATB2 Europe. This is Urban, my teenage firstborn. He is joyful. Curious. Full of…
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Urban’s Life with SATB2-Associated Syndrome
Beyond Reason
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Laura DeKraker Lang-Ree, a cancer caregiver to her daughter Cecilia who survived childhood leukemia.…
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Beyond Reason
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3
Editor’s Note: This is the third and final part of a caregiver story-share. To read part one, click here. For part two, click here. These moments of light, these tiny…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2
Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part one, click here. The initial…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2
Caroline Menzia’s Caregiver Story with FOXG1 Syndrome
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of Patient Worthy. At just 5…
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Caroline Menzia’s Caregiver Story with FOXG1 Syndrome
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 1
Editor's Note: This is the first part of an ongoing story. The second part will be published Tuesday, June 17th. The fluorescent lights of the hospital room hummed, a stark…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 1
