AstraZeneca has announced positive results from the pivotal phase III MIRANDA trial of tozorakimab, a groundbreaking first-in-class monoclonal antibody designed to treat Chronic Obstructive Pulmonary
On January 20, 2014, at 54 years old, I experienced what I casually called an “anxiety numbness event.” My left thumb and index finger went
The US Food and Drug Administration (FDA) has approved Idvynso, a groundbreaking two-drug single-tablet regimen combining 100 mg doravirine and 0.25 mg islatravir, for treating
My story began very suddenly on May 4th, 2025, when I was home from graduate school visiting my family. It had been a great day,
Glioblastoma multiforme (GBM) is the most common malignant brain tumor in adults and remains one of the most difficult cancers to treat. Characterized by aggressive
WebMD published a story about a young woman, Maddie, who had spent nine years in wheelchair confinement resulting from a rare metabolic disease related to
Health Canada has officially approved Cysklar® (cysteamine ophthalmic solution) 0.44%, marking a significant breakthrough for Canadians living with cystinosis. According to BusinessWire.com, the approval enables
Putting feelings into words does more than help you reflect. Brain imaging research shows it can shift activity inside emotional circuits. If you are someone
Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it.
As reported by Business Wire, Enanta Pharmaceuticals has initiated its first clinical study of EDP-978, a novel oral inhibitor of the KIT receptor tyrosine kinase
Editor’s Note: Patient Worthy is honored to share this article from our friend Jessica Lynn. To see the article in its original format, please click
Cancer cachexia represents one of oncology’s most overlooked catastrophes. Patients waste away, lose appetite, and deteriorate despite receiving chemotherapy, yet few treatment options exist to
I had learned that the many twists and turns on our rare disease path were similar to the families we met Originally published on May 11, 2022,
I was born in Long Island, New York, and raised in Southern California, where I grew up surrounded by sunshine and the beauty of the
Diabetic macular edema represents a silent threat to working professionals across America. The condition, which causes fluid accumulation in the macula, the eye’s central focusing
As reported on PharmaBiz, ModeX Therapeutics, a clinical-stage biotechnology company within OPKO Health, has begun dosing patients in a first-in-human clinical trial evaluating MDX2003, a
A New Shield for the Blood Supply: Grifols Earns FDA Approval for Malaria Test Grifols has reached a significant milestone in transfusion medicine with the
The aesthetic skincare market has long overlooked a fundamental principle: skin preparation matters as much as the procedure itself. According to PharmaBiz.com, Galderma’s Alastin brand
NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. The types of NF include neurofibromatosis type 1 (NF1), and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly called neurofibromatosis type 2, or NF2.
NF2-SWN affects about 1 in 25,000 people worldwide. NF2-related schwannomatosis is much less common than NF1. The condition is characterized by the development of benign tumors, called vestibular schwannomas (formerly called acoustic neuromas), on the nerve that carries sound and balance information from the inner ear to the brain (the eighth cranial nerve). These tumors affect both ears, often leading to partial or complete hearing loss.
People with NF2-SWN may also develop other types of benign brain or spinal tumors. The condition can also cause the development of cataracts or other eye findings, potentially compromising vision. Most people develop symptoms in the late teen and early adult years, although about 10% of people develop symptoms during late childhood. (Source: Children's Tumor Foundation)
Share your NF2-SWN story with us here: bit.ly/4dV7gru
#NF2SWN #nf2awarenessday #PatientWorthy
Amyotrophic Lateral Sclerosis (ALS) Awareness Month is a time to amplify voices, honor strength and bring more awareness to the realities of living with ALS. Every shared story, conversation and moment of support helps remind the ALS community they are not alone.
#amyotrophiclateralsclerosis #ALS #ALSawareness #PatientWorthy
Merck and Exelixis Team Up to Transform Treatment for High-Risk Colorectal Cancer Patients bit.ly/4dBbqVQ Read now at PatientWorthy.com
#PatientWorthy #colorectalcancer #keytruda
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
