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Editor's Note: Patient Worthy is honored to share this article, originally written by David St. Denis, President & Director at Anteris Technologies. Transcatheter aortic valve replacement (TAVR) was originally developed…
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TAVR Is Reaching Younger Patients. What Happens Decades Later?
Editor's Note: This article was originally written and submitted to us by Regina Portnoy. When people think about leadership in clinical research, they often think about timelines, enrollment goals, budgets,…
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Leadership Is More Than a Title
Editor's Note: Patient Worthy is honored to bring you this article, originally written by Kelsey Stanczyk, and shared with us by our friends at the Courageous Parents Network. So much…
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Pediatric Palliative Care
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 Michelle Patidar's patient story, provided to us by our friends at Elephants & Tea. To see the article in its original format,…
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It Was All a Dream
There's a lot to consider when you’re facing tumor removal surgery. Think about mandible or jaw surgery, for example. Your face is part of every interaction you have, how you…
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What’s Missing From Many Surgeries? The Answer Might Be Your Nerves
This charity has been set up to offer research based and lived experience, advice and support. Aims: To support any individual of any age with HFI, particularly parents of babies…
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Hereditary Fructose Intolerance (HFI) UK – an HFI Support Charity
My name is Jessica Glaspie, and I have been living with HIV for over 15 years! A lot of people think that life and love with HIV is almost impossible…
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Her Life Changed at a Red Light. Life and Love with HIV is Possible.
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,…
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“The Part That Died”
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 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)