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
💜 World Fibromyalgia Awareness Day 💜
Fibromyalgia is real—and so are the challenges faced by those living with it every day. Though symptoms may be invisible, the pain, fatigue, and impact on daily life are not.
Today, we stand in support of the fibromyalgia community by raising awareness, encouraging understanding, and amplifying lived experiences. Belief, compassion, and education can make a meaningful difference.
Let’s listen more closely, learn more deeply, and support those whose strength often goes unseen.
#WorldFibromyalgiaAwarenessDay #FibromyalgiaAwareness #InvisibleIllness #PatientWorthy #ChronicPainAwareness
Preparing for medical appointments can become a big part of navigating life with a chronic or rare illness. Many patients spend time tracking symptoms, organizing records, and writing down questions ahead of time so they can make the most of limited time with their healthcare team.
When so much can happen between appointments, preparation can help people feel more informed, organized, and confident advocating for their health!
#raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #PatientWorthy
For some people living with rare diseases, visible changes in skin, lips, or nail color can be a sign that the body is not getting enough oxygen or circulating blood properly. Symptoms like this can point to underlying heart, lung, neurological, or vascular involvement. Raising awareness helps highlight the wide range of ways rare diseases can affect the body and why recognizing these signs can be important for timely care and diagnosis.
#rarewordoftheweek #raredisease #rarediseaseawareness #PatientWorthy
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