Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Heterozygous familial hypercholesterolemia (HeFH) can be difficult to control on available standard-of-care cholesterol-lowering medications. Therapeutic interventions are needed to reduce high LDL cholesterol levels and improve health and quality-of-life for…
The American College of Rheumatology (ACR) held its annual scientific meeting -- ACR Convergence 2023 -- from November 10 to 15. During the meeting, stakeholders throughout the field shared insights…
In 2005, the U.S. Food and Drug Administration (FDA) approved abatacept for the treatment of moderate-to-severe rheumatoid arthritis. Twelve years later, in 2017, the FDA expanded the drug's approval…
When Kara Roberts learned that she was pregnant with a daughter, she was thrilled. While her pregnancy itself was relatively normal, Roberts learned that her daughter, Scarlett, would need one…
Ask any doctor about neuroblastoma and they'll tell you: this rare cancer, which forms from immature nerve cells, predominantly affects children who are five years old or younger. So when…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Vascular endothelial growth factor (VEGF) has been proven to increase how permeable blood vessels are in the eyes, causing them to leak. When new blood vessels form, these may also…
In the past, the U.S. Food and Drug Administration (FDA) approved Opdivo (nivolumab) for different forms of cancer, such as non-small cell lung cancer (NSCLC) and melanoma. More recently,…
When it comes to rare and chronic conditions, awareness is important. Oftentimes, disease-specific information remains within the community; many others are informed about the impact of these conditions. Awareness not…
In a recent news release, biotechnology company InflaRx N.V. announced that the first participant had been dosed with vilobelimab in a Phase 3 clinical trial. Within the trial, researchers are…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
26.2 miles. 5 boroughs. And a deep feeling of fulfillment when she finally crossed the finish line. When Holly Griffin first decided to run the New York Marathon, she was…
The American Society for Bone and Mineral Research (ASBMR) held its Annual Meeting from October 13 to 16, 2023. During the meeting, over 2,000 attendees and stakeholders came together…
Right now, there are no disease-specific treatments or cures for Angelman syndrome, a rare neurogenetic syndrome. Research centers around exploring options to reduce seizures, improve sleep, and contribute to…
Did you know — November is considered Chronic Obstructive Pulmonary Disease (COPD) Awareness Month! Awareness plays an incredibly important role in supporting families, advancing research, and advocating for better…
The varicella zoster virus is known for causing some of the world's most widespread viral conditions: chickenpox and shingles. Typically, people are infected during childhood and develop chickenpox. The virus…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
November is Gastric Cancer Awareness Month. So what do you know about gastric cancer? Stomach cancer, or gastric cancer, is a cancer that manifests in the stomach lining. It often…
When Brittany Miller welcomed her daughter Brooke into the world, she had no idea what the next few months would bring. At just a few weeks old, Brooke began having…
Coordinating medical care can be complex, especially when you are older. If you are dealing with a health condition like cancer, you might be wondering: how long can/will I…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Shortly after Laura Colby was born, she was diagnosed with a rare metabolic disorder known as maple syrup urine disease (MSUD). Normally, our body has an enzyme complex that breaks…
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