Historically, mesothelioma has been difficult to treat. Although treatment options exist, the cancer tends to respond poorly which results in a higher mortality rate. Improving patient care and outcomes (such…
Let’s start with a little vocabulary lesson. Today’s word? Biomarker. A biological marker, or biomarker, refers to some sort of measurable indicator of disease. For example, blood pressure, cellular gene…
The first few years of Saylor Baysden’s life involved a good deal of medical confusion. Her family pursued testing, leading to two diagnoses in 2020-21: autism and epilepsy. But her…
Caring is Sharing and Getting Involved. On April 17th Landmarks all over the world will be asked to ‘Light It Red’ in honor of Hemophilia Day. The theme of this…
According to a story from The Hill, the Centers for Disease Control and Prevention (CDC) has issued a new report which states that rates of tick-borne disease have increased 25%…
When the man in his 60s first hurt his leg, he wasn't too worried about it. He had cut his leg open on the door to his caravan and, like…
Children all across the globe enrolled in a study to evaluate Upstaza, a gene therapy medication, for the treatment of aromatic L-amino acid decarboxylase (AADC) deficiency. As part of their…
Medical research is crucial in better understanding diseases and discovering novel treatment options. Unfortunately, there is often one large barrier to research: funding. This is especially true within the rare…
In late February/early March 2023, Corby Davidson had some news to share. Normally, as a longtime host on The Ticket—a sports radio station—Davidson’s discussions were rife with the latest…
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…
Discovering a treatment for a rare disease is challenging but it can also be rewarding. This is especially true when treating an extremely rare disease such as perivascular epithelioid…
When asked about what information they wished they were given during their medical journeys, survivors of thyroid cancer reported a desire to have had more information on treatment. An article…
Written by Everett Alms Before I turned 15 years old, my parents had already taken me to see the Grand Canyon, NASA’s Kennedy Space Center, Disney World, Universal Studios, and…
Over the years, scientists have learned that Plasmodium falciparum (P. falciparum) is tricky. This parasite, which causes the deadliest type of malaria in humans (falciparum malaria), is transmitted through the…
Ayla Bashir and her parents, Sobia Qureshi and Zahid Bashir, have participated in a medical first with Ayla surviving Pompe disease. The same disease caused the death of her…
The National Institutes of Health (NIH) held its in-person Rare Disease Day at NIH convergence on February 28, 2023. This was the first time in a while that the event…
Reanna and Malaky always knew they wanted to start a family together. They tried for a while without success—so they were thrilled when they learned that Reanna was pregnant with…
According to a press release from the US Food and Drug Administration (FDA), on March 24, 2023, the agency issued a new draft guidance titled Clinical Trial Considerations to Support Accelerated…
People living with bronchiectasis, a chronic condition characterized by damaged airways, experience progressive lung damage and inflammation. This can lead to a multitude of consequences, including a reduction in…
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…
STATHMIN-2 (STMN2) is a protein that has been proven to play a role in axonal development, repair, and stability. This protein is highly expressed in human motor neurons; research…
Currently, the standards-of-care for narcolepsy include lifestyle changes involving diet and exercise, behavioral therapy, nap therapy, and certain medications designed to combat excessive daytime sleepiness. However, a majority of…
Boshamps Seafood & Oyster House has been serving Destin, FL with authentic Gulf seafood, well-mixed libations, and live music for years. But that isn’t the only way Boshamps has made…
Data from the first cohort of the Phase 2 KEYNOTE-158 trial, evaluating pembrolizumab for individuals with advanced thyroid carcinoma, showed positive safety and efficacy. According to Cancer Network, 103 participants…
The Orphan Drug Act of 1983 was designed to facilitate the development of orphan drugs, or drugs intended for rare or life-threatening indications. In the United States, rare conditions are…
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