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
New University of Michigan Center Aims to Expand Research on Sound-Wave Cancer Treatment
- October 15, 2026
The Unknown of It All
A Deep Dive into Fabry Disease
Measles: A Highly Contagious Virus
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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
Acoustic neuroma
Vanessa’s Acoustic Neuroma Story
There are parts of 2024 that I know only through photographs and the stories my sister has told me. In some of the pictures, I
Retinitis pigmentosa
Optogenetic Therapy
As reported on Inside Precision Medicine, a novel optogenetics-based treatment may offer a new path toward restoring some visual function in people with advanced retinitis
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep
October 9th: PANS/PANDAS Awareness Day
Aspire: “ We aspire to improve the lives of children and adults affected by PANS/PANDAS and other immune-related encephalopathies by closing the gap between symptom
X-linked Hypophosphatemia
How One XLH Diagnosis Sparked Conversations Across Three Generations
Editor’s Note: Patient Worthy is pleased to share this story, submitted to us by Connie B. What if one diagnosis could change the way an
Parkinson's Disease
New Research Project Will Explore Why Parkinson’s Affects Women and Men Differently
Two-year University of Arizona study will use human brain-cell models to investigate sex-specific biology and help guide future research and clinical trials. Critical Path Institute
Rare Disease
Genetic Testing: The Future is Here
Genetic testing is now more available than ever before. For those who suspect a genetic disorder, the best route is often through a genetic counselor.
Limb-girdle muscular dystrophy
Body Bound by Earth, Mind Master of the Cosmos: My Journey with LGMD2R
My name is A. Sabesan. I am 25 years old, living in Chennai, Tamil Nadu, India. Up until the age of 18, my life was
Hemophilia A
FDA Delays Decision on Novo’s Hemophilia A Therapy Over Manufacturing Concerns
As reported on BioSpace, the FDA has extended its review of Novo’s investigational hemophilia A therapy denecimig due to manufacturing-related concerns, although the company says
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#malebreastcancer Jake Messier
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Jake Messier @Metavivor #metastaticbreastcancer #malebreastcancer
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@FIA #ClinicalTrial #CPTV @cardurionPharmaceuticalsWe're sharing information about a new clinical trial for CPVT (catecholaminergic polymorphic ventricular tachycardia), sponsored by Cardurion Pharmaceuticals.
Please click here for additional trial information and study sites currently accepting inquiries for trial participation: www.fiacardiac.org/cardurion-cpvt.
