Myositis
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
Colangitis biliar primaria: un diagnóstico que tarda demasiado
- October 19, 2026
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
Amanda’s Epilepsy Journey
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Rare Disease
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
ECHS1
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
Pancreatic Cancer
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
Cancer
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
Acute lymphocytic leukemia
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
Fabry Disease
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
Measles
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
Rare Disease
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
Tay-Sachs Disease
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
Hepatocellular Carcinoma
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
Hepatocellular Carcinoma
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
Neurofibromatosis Type 1
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.
Uveal melanoma
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
Acute lymphoblastic leukemia
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
Rare Disease
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
Lung Cancer
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
Epilespy
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
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UPCOMING EVENTS
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A breast cancer diagnosis can bring uncertainty. Treatment can challenge your body and mind. Survivorship can bring its own unexpected emotions. Wherever you are along the journey, caring for your mental health matters. Remember, you don't have to have all the answers, and you don't have to face this alone!
How have you cared for your mental health after a breast cancer diagnosis? Share in the comments or connect with us here: ow.ly/PAmz50ZXKAn
#patientmentalhealth #survivorship #PatientWorthy
Movement-related symptoms can affect much more than physical mobility. For some patients, tremors, stiffness, or involuntary movements can make everyday activities like walking, eating, or getting dressed more challenging. Extrapyramidal symptoms may be associated with certain neurological conditions or occur as side effects of medications. Raising awareness helps highlight the importance of recognizing these symptoms and understanding their impact on daily life.
#rarewordoftheweek #raredisease #rarediseaseawareness #shareyourstory #PatientWorthy
Rare doesn't mean alone, but sometimes social media likes to test that theory. To everyone navigating a rare disease journey: thank you for being the awareness, the advocate, and occasionally the entire hashtag community!
#raredisease #rarebutnotalone #PatientAdvocate #PatientWorthy
