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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…
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The Zebra and the Bear: How a Mother’s Fierce Determination to Save Her Daughter May Lead to a Promising Gene Therapy Clinical Trial
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…
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The Things We Don’t Know
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…
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“The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s 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,…
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“My Own Worst Enemy” – Anna’s Experience with Hodgkin Lymphoma
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…
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Laura’s Battle Against Rickets
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…
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Navigating Medical Complexity Through Shared Decision-Making
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
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.…
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Sherry Crutchfield’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
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.…
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Jyll’s Journey with Glanzmann Thrombasthenia
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…
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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 story from our friends at Elephants & Tea. To see the article in its original form, please click here. Original author…
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The Unspoken Guilt of Living
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…
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Spanish Man Plans to Swim from Europe to Africa to Raise Awareness of Dravet Syndrome
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
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…
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Emily’s Story with Glanzmann Thrombasthenia
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…
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What Is the Blood-Brain Barrier? (Part 2)
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 —…
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What Is the Blood-Brain Barrier? (Part 1)
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:…
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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: CRISPR…
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What Is CRISPR?
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.…
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What is a Variant Database?
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,…
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All About Genetic Sequencing
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,…
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Controlling The Response After Cancer
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…
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Cailyn’s Stomach Cancer Journey
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…
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Cathy the Lupus and ITP Warrior
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