As reported on Yahoo! News, Bristol Myers Squibb (BMS) has received an expanded approval from the US Food and Drug Administration (FDA) for Camzyos (mavacamten),
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
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.
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
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)
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
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
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
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
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
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
A Chicago cancer conference this summer revealed an astounding development – a recent clinical trial of a new therapy, Daraxonrasib, was nearly doubling survival rates
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
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 is a rare inherited condition caused by changes in the GLA gene. These changes can lead to low or absent activity of an
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
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
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
Changes in cognitive function aren't always easy to recognize or understand. For individuals experiencing bradyphrenia, everyday activities like following conversations, making decisions, or completing tasks may require more time and effort. This symptom can occur with certain neurological conditions and may affect independence, communication, and overall quality of life. Raising awareness helps highlight the importance of understanding cognitive symptoms that aren't always visible to others.
#rarewordoftheweek #RareDisease #rarediseaseawareness #PatientWorthy
Living with a rare or chronic condition can shape your days, but it doesn’t define all that you are. Your hopes, joys, and sense of self are yours to hold and shape... through every chapter. 💙#RareDisease #ChronicIllness #PatientWorthy
Behind every stroke statistic is a person. A parent. A friend. A survivor.
This World Stroke Day we honor the strength of survivors, we support the families who care for them, and we commit to spreading awareness so fewer families have to hear "it's a stroke".
Watch for sudden changes: trouble with balance or vision, face-drooping, one-sided weakness, or speech changes. If you see them, call emergency services immediately. Minutes matter.
Let's turn awareness into action.
#WorldStrokeDay #StrokeAwareness #PatientWorthy
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