For decades, patients diagnosed with IgA nephropathy—an autoimmune condition where trapped immune complexes inflame and damage the kidney’s filtering units (glomeruli)—faced a discouraging outlook. Typically
As reported on BioSpace, AstraZeneca has entered a major artificial intelligence-focused research collaboration with biotechnology company insitro, committing up to $1.5 billion in potential payments
Cancelleri’s son, Levi, was diagnosed with Alexander disease as a baby. Above, he smiles widely, wearing the shirt his dad made. Photo courtesy of Tom
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
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
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 artĂculo, que nos fue enviado originalmente por AndrĂ©s 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
Raising awareness starts with understanding. đź’ś PTEN Hamartoma Tumor Syndrome (PHTS) is a rare genetic condition associated with the development of hamartomas and an increased risk of certain cancers. Greater awareness can help encourage early diagnosis, appropriate screening, and ongoing support for individuals and families affected by PHTS.
Today, we stand together to amplify awareness, support the PHTS community, and remind everyone that every rare condition deserves recognition, research, and understanding. đź’ś
More awareness. More support. Better outcomes.
#PTENHamartomaTumorSyndrome #phtsawareness #PatientWorthy
Did you know that an abnormally thickened heart muscle can make it harder for blood to flow out of the heart?
Obstructive hypertrophic cardiomyopathy is a heart condition that requires proper evaluation, testing, and individualized care. From echocardiograms and cardiac MRI to medications and specialized procedures, there are different ways healthcare professionals can assess and manage the condition.
Recognizing symptoms, understanding your diagnosis, and staying connected with your healthcare team are important steps toward better heart health.
Awareness starts with education. Share this post to help spread the word! ❤️
Also, click on the link below to share your story with us today -
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#obstructivehcm #hypertrophiccardiomyopathy #PatientWorthy
Vestibular Disorders Association (VEDA)Sometimes the hardest part of describing a vestibular disorder is finding words for sensations that don't sound possible. đź’š
Walking on a trampoline when the floor is solid. Floating when you're standing still. Feeling pulled in one direction. Seeing the world bounce when you move.
These descriptions may sound unusual, but sensations of rocking, swaying, imbalance, spatial disorientation and unstable vision can occur with vestibular dysfunction.
So when someone says, “I don't know how to explain it, but...” believe them.
What’s the strangest way you’ve had to describe a vestibular symptom?
#VestibularDisorders #VestibularSymptoms #Dizziness #ChronicDizziness #InvisibleIllness #Oscillopsia #BalanceDisorders #VestibularCommunity #VeDA
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