Eye Disease
Turning Heart Data Into an Early Warning System for Vision Loss
A UCLA Health study published on UCLAHealth.org suggests that numbers already used to gauge heart health may also offer an early warning for serious eye
Ronnie’s Journey: How a Lifelong Series of Symptoms Led to a Sjogren’s Diagnosis
From Invisible Pain to Unwavering Spirit: My Fabry Disease Journey
Breaking New Ground: Immunotherapy Now Available for Recurrent Ovarian Cancer Patients
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Cancer
New Immunotherapy Strategy Targets Tumor ‘Bodyguards,’ Shows Powerful Results in Preclinical Cancer Models
As reported on ScienceDaily, a research team at the Icahn School of Medicine at Mount Sinai has unveiled a novel immunotherapy that tackles metastatic cancer
Graves' Disease
Medical Gaslighting Is Real: The Appointment That Changed Everything
Editor’s Note: We’re honored to share part 4 of 10 of an ongoing blog series, originally written by Elena Genik. When You Go to a
MPS I (Hurler Syndrome)
FDA Places Clinical Holds on REGENXBIO’s MPS Gene Therapy Programs After Tumor Detected in Trial Participant
As reported on drugs.com, REGENXBIO has disclosed that the U.S. Food and Drug Administration has halted clinical testing of its investigational gene therapies RGX‑111 and
Myelofibrosis
James’ Story: Navigating Life with Myelofibrosis
Editor’s Note: Patient Worthy is honored to share this patient story, provided to us by our friends at Heal Canada, and originally written for the
Obesity
Roche’s Obesity Drug Shows Promise Against Lilly and Novo Nordisk
Roche has announced encouraging results from its Phase II trial of CT-388, an experimental obesity treatment that achieved placebo-adjusted weight loss of 22.5% over 48
Squamous-cell carcinoma
EMA Endorses First Immunotherapy Option for Advanced Anal Cancer
The European Medicines Agency (EMA) has issued a positive opinion recommending that retifanlimab (Zynyz) be approved for an expanded indication to treat adults with advanced
Graves' Disease
The Invisible Battle No One Warned Me About: Developing Thyroid Eye Disease
Editor’s Note: Patient Worthy is honored to share part 3 in an ongoing 10-part series, written and shared with us by Elena Genik. When My
Thyroid eye disease
Artificial Intelligence Advances Eye Disease Diagnosis: Deep Learning Shows Promise in Distinguishing Thyroid Eye Disease from Orbital Myositis
Researchers have developed an innovative deep learning model capable of accurately differentiating thyroid eye disease (TED) from orbital myositis using computed tomography (CT) imaging, potentially
Hunter Syndrome
FDA Places Clinical Hold on REGENXBIO’s MPS Gene Therapy Programs After Tumor Case Review
As reported on Drugs.com, REGENXBIO has announced that the U.S. Food and Drug Administration (FDA) has halted clinical testing of its investigational gene therapies RGX‑111
Pancreatic Cancer
An International Team of Researchers Identify a New Key Factor Influencing Pancreatic Cancer
Several highly esteemed Institutes such as the Mayo Clinic and CONICET have identified critical elements contributing to the aggressiveness of Pancreatic cancer. The survival rate
Melanoma
Personalized Cancer Vaccine Shows Long-Term Protection Against Melanoma Recurrence
Moderna and Merck have announced promising five-year data for a groundbreaking personalized cancer treatment that combines mRNA technology with immunotherapy to prevent melanoma from returning
Breast Cancer
Two-Decade-Old Cancer Vaccine Study Reveals Clues to Long-Term Survival
As reported on Science Daily, a breast cancer vaccine tested more than 20 years ago is drawing renewed scientific interest after researchers discovered that every
Graves' Disease
When Healing Goes Wrong: How I Accidentally Triggered My Graves Disease
Editor’s Note: Patient Worthy is honored to share part 2 in an ongoing 10-part series, written and shared with us by Elena Genik. Before the
Cancer
Why Most Cancer Patients Don’t Benefit from Modern Immunotherapy, And Why Your Heart Medication Might Change That
Cancer immunotherapy represents one of modern medicine’s greatest achievements, yet it’s also one of its most frustrating paradoxes: a treatment that works miracles for some
Propionic Acidemia
Moderna Partners With Recordati to Advance mRNA Therapy for Propionic Acidemia
As reported on BioSpace, Moderna has entered a commercialization partnership with Italy‑based Recordati to support the development of mRNA‑3927, an investigational mRNA therapy for propionic
Osteosarcoma
How Artificial Intelligence Can Transform the Fight Against Childhood Osteosarcoma
Osteosarcoma is a diagnosis no family should ever have to face. It is the most common primary bone cancer in children and adolescents, yet treatment
Dementia
The Weight of Prevention: How Obesity and Hypertension Directly Trigger Dementia
A groundbreaking genetic study published in The Journal of Clinical Endocrinology & Metabolism and reported by ScienceDaily.com has revealed that obesity and high blood pressure
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For many people living with a rare disease, changes in speech aren’t about effort or intelligence — they’re the result of neurological or muscular involvement affecting how the body controls communication. Recognizing symptoms like this can be an important step toward diagnosis, understanding disease progression, and ensuring patients receive the support they need to be heard in every sense. #RareWordOfTheWeek #RareDisease #RareDiseaseMonth #PatientWorthy
Myositis may be invisible to many, but for those living with it, every step can be a battle. From muscle weakness to chronic fatigue, this rare autoimmune condition affects strength, mobility, and daily life. Let's raise awareness, support research, and stand with the myositis community. Click the link below to share today, bit.ly/3VuxFDV #myositisawareness #autoimmunedisease #PatientWorthy
We're excited to share Gretchen's story in honor of Rare Disease Month! Gretchen was diagnosed with Salmonella osteomyelitis, and it almost killed her, twice. She shares her experiences to remind others that it's ok to be scared. It's ok to worry. It's ok to feel any which way about your diagnosis, but you must keep moving forward. Please read Gretchen's full story here: bit.ly/4awP3Ay
Share your rare disease story with us here: bit.ly/4dV7gru
#salmonellaosteomyelitis #rarediseasemonth #rarediseaseweek #PatientWorthy
