Oral corticosteroid drugs can help treat Bell’s palsy, a condition which causes temporary facial weakness or paralysis, if the muscles remain paralyzed over time. According to News Medical, researchers…
According to an article from Marisa Wexler in Muscular Dystrophy News, promising study data is available from the Phase 1 ARCH study. Within the study, researchers evaluated EDG-5506, an…
According to a story from Patient Worthy partner CureDuchenne, the organization has recently launched its CureDuchenne Occupational Therapist Certification Program. This program is intended to give occupational therapists advanced skills…
Before you read on, make sure you have read Part 1 of our interview. In Part 1, Bridget discusses what STXBP1 disorders are and the diagnostic journey her family went…
October 23 is recognized each year as Kabuki Syndrome Awareness Day, a time to help spread awareness about this syndrome among the general public and in the medical field. Kabuki…
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…
When Elena Sheppard, 35, was first told that she was pregnant with twins, she was thrilled. Her pregnancy went by fairly smoothly for the most part. However, she woke up…
Neisseria bacteria colonize on the mucosal surfaces of many animals, including humans. In the past, researchers believed that this bacteria could only cause meningitis and gonorrhea in humans. However, shares…
“Together, we can do hard things.” That’s the mission of Clara Inspired, a nonprofit organization that aims to raise awareness and funds to cure genetic disorders like STXBP1 disorders. It’s…
In an investor news release from biopharmaceutical company Avidity Biosciences, Inc., the company shared that the FDA placed a partial clinical hold on new enrollment for the Phase 1/2…
Previously, the American Kidney Fund launched the Unknown Causes of Kidney Disease (UCKD) Project. Through the project, the AKF is working to better understand how undiagnosed or misdiagnosed causes…
A code for an autism-linked syndrome has now been established and entered into the U.S. diagnostic manual that catalogs health conditions. According to a recent report in Market Watch,…
According to a story from Cancer Network, the results of a recent retrospective study have found that a two-part combination treatment for diffuse large B-cell lymphoma (DLBCL), a rare cancer,…
According to a story from the Irish Examiner, young people in Ireland are encouraged to watch out for signs of meningitis following an abnormal cluster of fatalities and serious illness…
Before you read on, don't forget to take a look at Part 1 of our interview. In Part 1, Savanah discussed what metastatic breast cancer (MBC) is, her diagnostic journey, and treatment…
Aduhelm was recently approved by the FDA for the treatment of Alzheimer’s disease (AD). The FDA approval, the first in the history of the disease, was based on the drug’s…
If you’re into electronic music, you need to check out DJ Funk Puppy. This ten-year-old (who goes by Richard Tyler Greene III in his day-to-day life) is a talented DJ,…
Chances are, you’ll never meet anyone like Lizanne, a 22-year-old woman from the Netherlands. Not only is she extraordinarily passionate about storytelling and filmmaking, but she was diagnosed with a…
When Branden was just a young child, he was diagnosed with a rare genetic disorder called chronic granulomatous disease (CGD). Now, at 33 years old, Branden is passionate about raising…
October is Breast Cancer Awareness Month. This month is dedicated to raising awareness about the impact of breast cancer, raising funds for research, supporting those with breast cancer, and advocating…
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…
In the past, myofibers (terminally differentiated post-mitotic cells that help make up muscle tissue) have been implicated in the development and progression of Duchenne muscular dystrophy (DMD). Basically, researchers have…
In mid-September 2022, specialty pharmaceutical company Acasti Pharma Inc. (“Acasti”) shared via a news release that it had initiated a pharmacokinetic study on GTX-102. Within the study, Acasti hopes…
Families caring for medically complex children face almost unfathomable decisions, often with no prior experience to guide their thinking and acting. Second only to the clinician expertise on which…
At the start of October 2022, biopharmaceutical company Mustang Bio, Inc. shared via news release that the first patient was treated in a study of MB-106. Within the study,…
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