For nearly two decades, I’ve been building and maintaining a global online community for individuals and families affected by Moebius syndrome, a rare neurological condition
Fernando Mendoza’s journey to becoming the Las Vegas Raiders’ first overall NFL Draft pick is not a typical underdog narrative, it’s a testament to resilience,
Editor’s Note: Patient Worthy is honored to share this piece from our friends at Elephants & Tea, originally written by Katie Newbaum. To see the
As reported on NBC News, an ophthalmologist with a history of criticizing the U.S. government’s Covid-19 vaccine strategy is emerging as a leading contender to
My name is Maha, and I had the privilege of being my father’s — my Baba’s — caregiver. I’ll be blunt; it was tough. When
Johnson & Johnson announced promising long-term efficacy and safety data for Icotyde (icotrokinra), the first and only targeted oral peptide that precisely blocks the IL-23
As reported on PharmaBiz, Roche has secured CE mark approval for its Elecsys Neurofilament Light Chain (NfL) assay, a blood-based test designed to help detect
Astrocytoma and glioblastoma are fast-growing brain cancers that often return after surgery, with survival for astrocytoma patients averaging only four to five months. While medications
Lynk Pharmaceuticals announced a significant development in its pipeline with the China National Medical Products Administration (NMPA) formally accepting the New Drug Application (NDA) for
I’ve always been a nature lover. I like nothing better than going for a hike in the woods or strolling along the beach or gazing
Editor’s Note: Patient Worthy is honored to share this submission by Regina Portnoy, a clinical researcher with 20 years of experience working alongside patients. Many
Daiichi Sankyo and Merck announced a significant regulatory milestone with the FDA’s acceptance and Priority Review of ifinatamab deruxtecan (I-DXd), a potentially first-in-class therapeutic targeting
As reported on BioPharmaDive, Roche is restarting efforts to get Elevidys, a gene therapy for Duchenne muscular dystrophy (DMD), approved in Europe by launching a
I’ve always been an overachiever – someone who puts their mind to something and delivers more than was expected, someone who strives for greatness. I
IDEAYA Biosciences and Servier announced promising Phase 2/3 trial results for darovasertib, a selective PKC inhibitor, combined with crizotinib in the treatment of metastatic uveal
As reported on Healthline, a man in Norway has entered sustained HIV remission following a stem cell transplant, becoming one of a small number of
Two University of Michigan professors, Jolanta Grembecka and her husband Tomasz Cierpicki, created the newly approved leukemia drug ziftomenib. Its recent FDA approval offers new
Sarepta Therapeutics has announced a significant regulatory milestone in its efforts to secure permanent FDA approval for two breakthrough Duchenne muscular dystrophy (DMD) treatments. As
Cancer Commons #AcutelymphocyticleukemiaHere’s the latest from our Curious Dr. George! Read “How Would a Mayo Clinic Oncologist Manage His Own Acute Lymphocytic Leukemia?” here: bit.ly/CCCDGLitzow
When facing a frightening new cancer diagnosis, some people ask their doctors, “What would you do if you were me?” Here, our Curious Dr. George asks leukemia expert Mark R. Litzow, MD, how he would handle his own hypothetical cancer case. Dr. Litzow is Professor Emeritus in the Division of Hematology at the Mayo Clinic in Minnesota.
#CuriousDrGeorge #ALL #AcuteLymphocyticLukemia #AcuteLymphoblasticLeukemia #PrecisionOncology
This week, Patient Worthy is focusing on Parkinson’s Disease, sharing educational content to bring greater awareness and understanding to our community.
We’ll be featuring resources and insights on our social channels and patientworthy.com to help inform, empower, and support those living with Parkinson’s.
Interested in sharing your Parkinson’s story? Click the link below to connect with us.
bit.ly/4dV7gru
#ParkinsonsDisease #ParkinsonsAwareness #LivingWithParkinsons #ShareYourStory #PatientWorthy
Many rare diseases affect the nervous system and muscles, leading to symptoms like increased muscle tension or stiffness that can impact movement, comfort, and daily activities. For people in the rare disease community, symptoms like this are part of the complex ways these conditions affect the body. Raising awareness helps improve understanding of neurological symptoms and why recognizing them can be important for diagnosis and care.
#rarewordoftheweek #raredisease #rarediseaseawareness #PatientWorthy
© 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.
