Ebola – Lessons Learned
The Ebola outbreak in DR Congo was declared in May 2026. As reported in BBC News, authorities in DR Congo recently confirmed that the virus is spreading at an alarming…
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Ebola – Lessons Learned
CAPS Syndrome: A Summary, New Research, and Patient Stories
CAPS, or Cryopyrin-Associated Periodic Syndromes, is a group of rare autoinflammatory diseases caused by a genetic mutation affecting the cryopyrin protein, leading to increased inflammation. CAPS is usually linked to…
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CAPS Syndrome: A Summary, New Research, and Patient Stories
Liam’s Hunter Syndrome Story
Editor's Note: This story was originally written by Anne Denneen, and shared on Caring Bridge. So many things happen in life that you don’t even register them at the time. …
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Liam’s Hunter Syndrome Story
Colangitis biliar primaria: un diagnóstico que tarda demasiado
Nota del editor: Para Patient Worthy es un honor compartir este artículo, que nos fue enviado originalmente por Andrés Contreras. La colangitis biliar primaria (PBC) es una enfermedad crónica del…
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Colangitis biliar primaria: un diagnóstico que tarda demasiado
Primary Biliary Cholangitis: The Diagnosis That Arrives Years Too Late
Editor's Note: Patient Worthy is honored to share this article, originally submitted to us by Andres Contreras. Primary biliary cholangitis (PBC) is a long-term liver disease in which the immune…
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Primary Biliary Cholangitis: The Diagnosis That Arrives Years Too Late
Never Knowing When: Life With Cerebral Cavernous Malformation, and the Patient-Driven Search for a Cure
Editor's Note: Patient Worthy is honored to bring you this article, shared with us by our friends at Rareatives. Originally written by Davi Jacobs, the article can be found in…
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Never Knowing When: Life With Cerebral Cavernous Malformation, and the Patient-Driven Search for a Cure
Amanda’s Epilepsy Journey
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures,…
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Amanda’s Epilepsy Journey
The Grief No One Warned Me About
Sixteen years ago, when my daughter was diagnosed with a rare autoimmune disease, I knew I was scared. I knew I was overwhelmed. I knew I was stressed. What I…
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The Grief No One Warned Me About
Meet Asher: One Little Boy, One Rare Genetic Condition, and a World of Possibilities
At just two years old, Asher is already teaching us that the smallest milestones can be the biggest victories. Our son, Asher, was born on February 10, 2024. He's a…
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Meet Asher: One Little Boy, One Rare Genetic Condition, and a World of Possibilities
More Than a Diagnosis: Jonas, ECHS1D, and a Mother’s Search for Hope
When there is no treatment for your child's rare disease, how do you find a way forward? For one mother in the Czech Republic, the answer was to start asking…
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More Than a Diagnosis: Jonas, ECHS1D, and a Mother’s Search for Hope
Pancreatic Cancer Action Network: FDA Approval of Daraxonrasib
A Chicago cancer conference this summer revealed an astounding development – a recent clinical trial of a new therapy, Daraxonrasib, was nearly doubling survival rates for late-stage pancreatic cancer patients.…
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Pancreatic Cancer Action Network: FDA Approval of Daraxonrasib
New University of Michigan Center Aims to Expand Research on Sound-Wave Cancer Treatment
The University of Michigan has opened a $10 million research center dedicated to histotripsy, a technique that uses focused sound waves to destroy tumors. The center will make specialized equipment…
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New University of Michigan Center Aims to Expand Research on Sound-Wave Cancer Treatment
The Unknown of It All
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. Originally written by Mellory Torres, a survivor of acute lymphocytic leukemia, the article…
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The Unknown of It All
A Deep Dive into Fabry Disease
Fabry disease is a rare inherited condition caused by changes in the GLA gene. These changes can lead to low or absent activity of an enzyme called alpha-galactosidase A. As…
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A Deep Dive into Fabry Disease
Measles: A Highly Contagious Virus
Bangladesh did not meet its 2026 measles target due to vaccination gaps in 2024 and 2025 according to a report in Reuters. The following year saw cancellation of a nationwide…
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Measles: A Highly Contagious Virus
The 2026 Abbey Meyers Khushi Bridging RARE Award Honorees
IndoUSrare and GORD Foundation are honored to announce the 2026 Abbey Meyers Khushi Bridging RARE Award Honorees: Rare Disease is a global problem, a human problem, and the individuals below…
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The 2026 Abbey Meyers Khushi Bridging RARE Award Honorees
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
El cáncer de hígado y las comunidades hispana y afrodescendiente en Estados Unidos
Nota del editor: Para Patient Worthy es un honor compartir este artículo, que nos fue enviado originalmente por Andrés Contreras. El cáncer de hígado es la tercera causa de muerte…
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El cáncer de hígado y las comunidades hispana y afrodescendiente en Estados Unidos
Liver Cancer and the Hispanic and Black Communities in the United States
Editor's Note: Patient Worthy is honored to share this article, originally submitted to us by Andrés Contreras. Liver cancer is the third leading cause of cancer death worldwide. In the…
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Liver Cancer and the Hispanic and Black Communities in the United States
More Than 50 Surgeries and Still Becoming
My name is Kelli Frederick, M.A., and I have lived with neurofibromatosis for my entire life. I have also undergone more than 50 facial surgeries. When you live with a…
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More Than 50 Surgeries and Still Becoming
Roginolisib: What Two New Studies Tell Us—and What They Don’t Yet Show
Two papers published in Nature Communications report new findings about roginolisib, an experimental cancer drug being developed by iOnctura. One study describes how the drug interacts with a cancer-related enzyme…
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Roginolisib: What Two New Studies Tell Us—and What They Don’t Yet Show
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
When Nothing Hurts: Why Advocating for Your Own Health Matters
Editor's Note: The following article was submitted to Patient Worthy by Regina Portnoy. “Nothing hurts. I feel fine. Why would I need to see a doctor?” Throughout my career, I…
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When Nothing Hurts: Why Advocating for Your Own Health Matters
Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice
Editor's Note: Patient Worthy is honored to share this patient story, submitted to us by Shelly Glenn. For most of my career, I worked on the other side of cancer.…
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Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice
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
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