Suffering and Faith
Editor's Note: Patient Worthy is honored to present this story, originally written by Blyth Lord, founder of Courageous Parents Network. I was asked earlier this week by a high school…
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Suffering and Faith
Make-A-Wish Side Effect
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the article, originally written by Natalia Collings, in its original format,…
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Make-A-Wish Side Effect
Jon’s Epilepsy-Caregiver Story
Editor's Note: Patient Worthy is honored to share the following caregiver story, submitted to us by Jon Scheinman of The Epilepsy Foundation. To see the article in its original format,…
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Jon’s Epilepsy-Caregiver Story
My Big Sister
Editor's Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr. Adebimpe Adewusi, the article can…
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My Big Sister
One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)
Editor's Note: Patient Worthy is honored to share this article from our friends at Rareative. To see the article in its original format, please click here. When Jen brought Callie…
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One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)
Sharing Our Stories Is a Gift, and It Costs Us Every Time
Editor's Note: Patient Worthy is honored to share this essay from Carrie Ostrea. I have been fortunate to share my rare disease daughter's story for seventeen years. I have shared…
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Sharing Our Stories Is a Gift, and It Costs Us Every Time
The Willem Family’s Medical Challenges
For most of my life, I knew something was wrong with my body. I just never had a name for it. When I was around 18, I had what I…
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The Willem Family’s Medical Challenges
A Guide to Staying Well and Strong for New Caregivers
For new caregivers supporting a parent, partner, or relative at home, the days can turn into an unbroken string of decisions, vigilance, and worry. The caregiving challenges often arrive faster…
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A Guide to Staying Well and Strong for New Caregivers
The Thousand-and-Second Word: My Brother’s Life with XLID-98
Editor's Note: This story was originally written and submitted to us by Anthony Clark. "Okay, Michael, hold the ball up to your ear, then throw it! Just like this: ear,…
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The Thousand-and-Second Word: My Brother’s Life with XLID-98
Raising Awareness of Hunter Syndrome: Stephanie’s Caregiver Story
This is my son Nikolai. Nikolai was recently diagnosed with Mucopolysaccharidosis type 2, or "Hunter Syndrome." A rare genetic form of childhood dementia, it's caused by a mutation in the…
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Raising Awareness of Hunter Syndrome: Stephanie’s Caregiver Story
To Stand Beside Suffering
Editor's Note: We're honored to share the following article from our friends at the Courageous Parents Network. To see this article in its original format, please click here. Parents will…
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To Stand Beside Suffering
End Sepsis – Rory’s Story
Editor's Note: Patient Worthy is honored to share this article with you, kindly provided to us by our friends at End Sepsis. To see the article in its original format,…
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End Sepsis – Rory’s Story
First Patient in the World Treated With Gene Therapy for Cockayne Syndrome
Editor's Note: This article was shared with us by Jo Kaur. To see it in its original format, please click here. Riaan Singh Digeorge, age 6, of New York…
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First Patient in the World Treated With Gene Therapy for Cockayne Syndrome
Porter’s Perspective | A SYNGAP1 Sibling
Editor's Note: We are honored to share this story from our friends at CURE SYNGAP. To see this article in its original format, please click here. Porter is one of Jansen’s…
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Porter’s Perspective | A SYNGAP1 Sibling
Jon’s Caregiver Story
Editor's Note: This post was written and submitted to us by Jon Scheinman, and originally shared on LinkedIn. To see the article in its original format, please click here. I…
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Jon’s Caregiver Story
Teen Caregiver Finds New Purpose: Lilly’s Story
Editor's Note: This article was shared with us by our friends at the AAMDS International Foundation. To see the article in its original format, please click here. “I would like…
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Teen Caregiver Finds New Purpose: Lilly’s Story
Some Dialysis Humor, Part 3
Editor's Note: This is part 2 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles' Chronic Kidney Disease (CKD). To…
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Some Dialysis Humor, Part 3
Some Dialysis Humor, Part 2
Editor's Note: This is part 2 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles' Chronic Kidney Disease (CKD). To…
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Some Dialysis Humor, Part 2
Natalie’s GACI Story
Editor's Note: Patient Worthy is honored to share this story, originally written by Anne and Jerry van Wyk, and shared with us by our friends at the Brighter Hope Foundation.…
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Natalie’s GACI Story
“Two Rare Diagnoses, One Common Lesson: Start with Genetic Testing”
Every day, parents just like me sit in doctors’ offices searching for answers. They know something isn’t quite right. Maybe their child isn’t meeting milestones. Maybe their development has stalled,…
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“Two Rare Diagnoses, One Common Lesson: Start with Genetic Testing”
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
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
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 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
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
