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
🗓️ Managing Metabolic Dysfunction-Associated Steatohepatitis (MASH), can mean keeping track of medications, appointments, lab work, and follow-up visits. Staying organized can help reduce stress and make it easier to stay on top of your care. Whether you use a planner, phone reminders, a medication tracker, or a calendar app, finding a system that works for you can make a big difference.
💬 What is your go-to strategy for keeping track of medications and appointments? Share your tips in the comments!
#Mash #metabolicdysfunctionassociatedsteatohepatitis #liverhealth #PatientWorthy #PatientSupport #chronicillness #healthmanagement #shareyourstory
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Here's your reminder that you don't need someone's medical history to respect what they need.
Not every disability is visible. Not everyone with the same diagnosis has the same needs. And nobody owes you a personal explanation just to access an accommodation.
You don't have to understand why someone needs a wheelchair, a quiet space, extra time, a seat, or another form of support to respect their right to use it.
So before you question someone, assume they're exaggerating, or decide they “don't look disabled,” remember this: your understanding is not a requirement for someone else's dignity.
Be curious without being intrusive. Be considerate without being asked. And remember that accessibility benefits more people than you might realize.
#AccessibilityMatters #DisabilityInclusion #PatientWorthy
Being able isn’t about doing things the same way as everyone else. It’s about finding your own path, embracing your strengths, and showing the world what’s possible. Every ability deserves to be seen and celebrated! #DisabilityAwareness #Inclusion #PatientWorthy
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