“The Part That Died”
Editor's Note: Patient Worthy is pleased to share this article from our friends at Elephants & Tea, originally written by Cecily Liu. To see the article in its original format,…
Continue Reading
“The Part That Died”
Our mission is to amplify the rare condition voice. One of the ways we achieve that is through collaborations across the community, from patients and caregivers to industry leaders in treatment research and development. To learn more, click here.
The Zebra and the Bear: How a Mother’s Fierce Determination to Save Her Daughter May Lead to a Promising Gene Therapy Clinical Trial
I was introduced to Amber Olsen, the “mama bear” in my new documentary film, The Zebra and the Bear, in the spring of 2016. A mutual friend asked if I…
Continue Reading
The Zebra and the Bear: How a Mother’s Fierce Determination to Save Her Daughter May Lead to a Promising Gene Therapy Clinical Trial
The Things We Don’t Know
Editor's Note: We're honored to share this patient story-share by Jess Ippolito, originally published by our friends at Stork Genetics. To see the article in its original format, please click…
Continue Reading
The Things We Don’t Know
“The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s Lymphoma
Editor's Note: Patient Worthy is proud to share this story from our friends at Elephants & Tea. To see the story in its original format, please click here. “Well, good…
Continue Reading
“The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s Lymphoma
“My Own Worst Enemy” – Anna’s Experience with Hodgkin Lymphoma
Editor's Note: Patient Worthy is honored to share this article from our friends at Elephants & Tea. To see the article in its original form, please click here. Dear Cancer,…
Continue Reading
“My Own Worst Enemy” – Anna’s Experience with Hodgkin Lymphoma
Laura’s Battle Against Rickets
Editor's Note: Patient Worthy is proud to share this story from GACI Global, originally published by the Italian Osservatorio Malattie Rare (OMaR). ARHR2 – Autosomal Recessive Hypophosphatemic Rickets Type…
Continue Reading
Laura’s Battle Against Rickets
Navigating Medical Complexity Through Shared Decision-Making
Editor's Note: Patient Worthy is proud to share this from our friends at the Courageous Parents Network. Throughout our lives we are faced with decisions of many kinds. Some involve…
Continue Reading
Navigating Medical Complexity Through Shared Decision-Making
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…
Continue Reading
The Weight of a Decision
Sherry Crutchfield’s Journey with Glanzmann Thrombasthenia
Editor's Note: Patient Worthy is proud to share this story from our friends at the Glanzmann's Research Foundation (GRF). To see the article in its original format, please click here.…
Continue Reading
Sherry Crutchfield’s Journey with Glanzmann Thrombasthenia
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.…
Continue Reading
Vincenzo’s Journey with Glanzmann Thrombasthenia
Jyll’s Journey with Glanzmann Thrombasthenia
Editor's Note: Patient Worthy is honored to share this story from our friends at the GRF (Glanzman's Research Foundation). To see the article in its original form, please click here.…
Continue Reading
Jyll’s Journey with Glanzmann Thrombasthenia
How Safe Is Tylenol Really? The Answer Is Not As Simple As You May Think
Editor's Note: Patient Worthy is honored to share this article from our friends at the Fatty Liver Foundation. We get a lot of questions about Tylenol and pain relievers in…
Continue Reading
How Safe Is Tylenol Really? The Answer Is Not As Simple As You May Think
The Unspoken Guilt of Living
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the article in its original form, please click here. Original author…
Continue Reading
The Unspoken Guilt of Living
Spanish Man Plans to Swim from Europe to Africa to Raise Awareness of Dravet Syndrome
Editor's Note: This article was translated into English from Spanish; there may be inconsistencies or minor errors. Sports and the fight against Dravet syndrome will once again go hand in…
Continue Reading
Spanish Man Plans to Swim from Europe to Africa to Raise Awareness of Dravet Syndrome
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…
Continue Reading
Opinion Piece: When the FDA Says No, Families Like Mine Lose More Than Medicine
Emily’s Story with Glanzmann Thrombasthenia
Editor's Note: Patient Worthy is proud to share this article from our friends at Glanzmann's Research Foundation. To see the article in its original form, please click here. Hello! I…
Continue Reading
Emily’s Story with Glanzmann Thrombasthenia
What Is the Blood-Brain Barrier? (Part 2)
Editor's Note: Patient Worthy is proud to share this article from the TESS Research Foundation. To see the article in its original form, please click here. TL;DR — the blood-brain…
Continue Reading
What Is the Blood-Brain Barrier? (Part 2)
What Is the Blood-Brain Barrier? (Part 1)
Editor's Note: Patient Worthy is proud to share this article with permission from the TESS Research Foundation. To see the article in its original form, please click here. TL;DR —…
Continue Reading
What Is the Blood-Brain Barrier? (Part 1)
Differences Between a Gene Therapy Clinical Trial and a Cure
Editor's Note: Patient Worthy is proud to share this article from our friends at the TESS Research Foundation. To see the article in its original format, please click here. TL;DR:…
Continue Reading
Differences Between a Gene Therapy Clinical Trial and a Cure
What Is CRISPR?
Editor's Note: Patient Worthy is proud to share this article from our friends at the TESS Research Foundation. To see the article in its original format, please click here. TL;DR: CRISPR…
Continue Reading
What Is CRISPR?
What is a Variant Database?
Editor's Note: Patient Worthy is honored to bring you this article from our friends at the Tess Research Foundation. To see the article in its original form, please click here.…
Continue Reading
What is a Variant Database?
All About Genetic Sequencing
Editor's Note: Patient Worthy is honored to bring you this article, shared with us by our friends at the Tess Research Foundation. To see this article in its original state,…
Continue Reading
All About Genetic Sequencing
Controlling The Response After Cancer
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the original article, please click here. One day, many years ago,…
Continue Reading
Controlling The Response After Cancer
Cailyn’s Stomach Cancer Journey
Editor's Note: Patient Worthy is proud to share this story from our friends at No Stomach for Cancer. To see the article in its original form, please click here. In…
Continue Reading
Cailyn’s Stomach Cancer Journey
Cathy the Lupus and ITP Warrior
Editor's Note: This article was shared with Patient Worthy by our friends at PDSA.org. To see the article in its original format, please click here. I had heard of lupus…
Continue Reading
Cathy the Lupus and ITP Warrior
