Acute lymphocytic leukemia
My Sister’s Cells
Editor’s Note: This story was shared with Patient Worthy by our friends at Elephants & Tea. The article, originally written by Kimberly Oliver, can be
Merz Completes Enrollment for Phase 3 XEOMIN Migraine Studies Ahead of Schedule
A Ray of Hope for Improving CAR-T for AML
The Importance of Whole Person Care During Treatment and Beyond
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Parkinson's Disease
Mission Therapeutics Begins Phase 1b Study of Experimental Parkinson’s Treatment
The international study will examine whether MTX325 affects processes linked to Parkinson’s disease, as well as assess its safety and tolerability. As reported in a
Hypertrophic Cardiomyopathy
Bristol Myers Squibb Wins FDA Expansion for Camzyos in Pediatric Obstructive Hypertrophic Cardiomyopathy
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),
Ebola
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
CAPS
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.
Hunter Syndrome
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
Primary Biliary Cholangitis
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)
Primary Biliary Cholangitis
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
Rare Disease
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
Epilespy
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
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
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
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