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Insights into Gazyva as a Treatment for Lupus/SLE
A recent article from Inside Precision Medicine states: For decades, systemic lupus erythematosus (SLE) has resisted tidy solutions, a shapeshifting autoimmune disease that crosses into
The Silent Struggle – Mental Wellness in NF2 Surgery
Merck and Exelixis Team Up to Transform Treatment for High-Risk Colorectal Cancer Patients
Duchenne Muscular Dystrophy: Coping and Caring
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Chronic obstructive pulmonary disease (COPD)
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Astrocytoma
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HIV/AIDS
Merck’s Idvynso: A New Single-Tablet Breakthrough in HIV Treatment
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
Hepatic Adenoma
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Glioblastoma
Experimental Ultrasound-Based Therapy Shows Early Promise Against Glioblastoma
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Rare Disease
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Cystinosis
Game-Changing Eye Drop Therapy Now Available to Canadian Cystinosis Patients
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Health Benefits of Putting Feelings to Words
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“I Am More Than the Person in the Bed” – Kristian’s Message to the World
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Chronic urticarias
Enanta Begins First-in-Human Trial of Oral KIT Inhibitor for Chronic Urticaria
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Spinal Muscular Atrophy
“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
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
Targeting Cancer’s Hidden Killer: New Therapy Takes Aim at Muscle-Wasting Syndrome
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Throwback Thursday: Updates on Patients from Patient Worthy’s Past
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,
Bladder cancer
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A Six-Month Solution: How Eclipse Life Sciences Is Tackling a Persistent Vision Problem
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Lymphoma
ModeX Advances Novel Tetraspecific Antibody Into First-in-Human Study for B‑Cell Lymphoma
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
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Blood Supply, Malaria, and the Contribution of Grifols Pharma
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Getting answers can take time, testing and many appointments. Understanding how Becker muscular dystrophy is diagnosed can help make the process feel a little less overwhelming and bring more clarity to what comes next. 💙
Share your story with us here: bit.ly/4dV7gru
#beckermusculardystrophy #beckermusculardystrophyawareness #bmd #raredisease #shareyourstory #PatientWorthy
May is Healthy Vision Month — a reminder that protecting your eyesight is just as important as caring for the rest of your body. 👁️✨
Many eye conditions develop gradually and may not show symptoms until vision is already affected, which is why routine eye exams matter. Simple habits like wearing UV-protective sunglasses, limiting eye strain from screens, managing chronic health conditions, eating nutrient-rich foods, and knowing your family history can all play a role in long-term eye health.
Your eyes help you experience every moment, memory, and milestone — don’t wait until there’s a problem to prioritize them. Prevention, awareness, and early detection can make all the difference. 💙
#HealthyVisionMonth #EyeHealth #PatientWorthy
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
