It all began at a movie theater. Kurt Harrington and his father were leaving the theater when his father decided to hold the door open for some others. Someone knocked…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
In the past, doctors and researchers surmised that having chronic kidney disease (CKD) could increase the risk of having a stroke. Yet they didn’t know exactly why it happened or…
It can be tough to deal with a cancer diagnosis. After all, the diagnosis comes with a huge emotional and psychological impact, not to mention the uncertainty about the future…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
The citizens of Cincinnati know one universal truth: that the annual Flying Pig Marathon weekend will bring fun, family, and fulfillment to their city. And with that universal truth comes…
Usher syndrome is a rare genetic disorder that is characterized by deafness and often paired with retinitis pigmentosa (RP), an inherited disease which causes retinal degeneration and vision loss. There…
During the REPREVIO clinical study, researchers sought to understand whether using vedolizumab (Entyvio) after bowel resection could prevent the risk of recurrence in individuals with advanced Crohn’s disease. Participants were…
Written by Carter Hemion On April 17, 2023, Governor Inslee signed a ceremonial proclamation recognizing May as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder Awareness month in Washington State. The International…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
There are still many unknowns when it comes to our genetics. How do gene variants of unknown significance (VUS) affect us? In what ways can we identify if variants…
The FDA estimates that there are about five hundred people in the USA with the SOD1 mutation out of a total of approximately thirty thousand ALS patients. According to a…
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…
KMT2A rearrangements—a DNA fault—lead to treatment-resistant acute lymphoblastic leukemia (ALL) in infants. While around 50% of children with KMT2A rearrangements respond well to intensive chemotherapy, the remaining 50% do…
You caught me: I'm a Swiftie. I first saw Taylor Swift on her Speak Now tour and, in 2 weeks, am taking on the Eras tour in Philadelphia (PS: if you have any…
There is no cure for cystic fibrosis. That is the reason the Cystic Fibrosis Research Institute (CFRI) is very vocal and makes it clear that cooperation is needed from the…
Throughout the globe, there are many countries in which rare disease awareness and support are still lacking. While India has made some strides in improving care for people within…
According to a story from Healio, a recent study found that patients with metastatic pancreatic cancer (more specifically, pancreatic ductal adenocarcinoma, the most common form) that were being treated with…
Over the past few years, more research has been done into the health impacts of breast implants. In fact, researchers and doctors have even coined the term “breast implant illness,”…
The London Marathon took place on April 23, 2023—and one mom was running for an especially important cause: to raise Angelman syndrome awareness. According to an article from the BBC,…
When Kristen Moore’s son Jackson was first diagnosed with tuberous sclerosis complex (TSC), she decided to translate her emotions into action. As WSOC-TV reports, she dove into education, awareness,…
According to a story from Healio, the US Food and Drug Administration (FDA) has recently updated the indication for the drug teprotumumab (marketed as Tepezza). Approved for the treatment of…
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…
Right now, there are a number of treatment options available for mantle cell lymphoma (MCL): chemotherapy (with/without immunotherapy), stem cell transplants, and targeted therapy. Yet despite these options, this…
Lyme disease is an illness caused by Borrelia burgdorferi (B. burgdorferi) bacteria that is transmitted through the bite of an infected deer or western blacklegged tick. If you live…
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