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
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
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
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@HSAN1Edsociety
Hereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E) is an extremely rare hereditary neurological degenerative disease that shuts down many of the nervous systems in the bodHereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E) is an extremely rare hereditary neurological degenerative disease that shuts down many of the nervous systems in the body.
Affected individuals will experience a progressive inability to hear, walk, speak, or to comprehend simple tasks or conversations. Eventually the individual’s body will completely shut down, causing death in their late 40’s to early 50’s.Hereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E) is an extremely rare hereditary neurological degenerative disease that shuts down many of the nervous systems in the body.
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