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…
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…
If Wave Life Sciences’ recently submitted trial application for WVE-006 is approved, it will become the first RNA editing treatment in a clinical development setting. Wave’s CEO, Paul Bolno,…
Strokes, traumatic brain injuries, amyotrophic lateral sclerosis, Alzheimer's disease, and multiple sclerosis all share something in common: they all have profound effects on the brain and its function. They can…
We are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is…
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…
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 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,…
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…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Jenna Cohen was 20 weeks pregnant when a scan revealed a significant developmental abnormality in her future child: the absence of the fibula. The fibula, or calf bone, is found…
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…
November 10 is recognized as World Neuroendocrine Tumor (NET) Cancer Day, a time to spread awareness about neuroendocrine tumors, a group of rare cancers, among the medical field and in…
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…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
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…
According to reporting from WJTV, there have been 34 cases of West Nile Virus in humans diagnosed in Mississippi this year. The health department reports that cases were found in…
Imagine the frustration of Faustina Cavero, unable to follow her maternal instincts that told her something was wrong with her baby. Doctors at two different hospitals disagreed with her and…
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 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,…
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