Losing a loved one can be life-shattering. Ginny Toman knows this, as she lost her father to progressive supranuclear palsy (PSP) in 2019. Since then, she has learned how to…
A new film is set to premiere tomorrow, and it depicts the life of Jeff Golub. This famous musician was known for his talent on the guitar, but what many…
Funding for clinical trials can be an issue, especially for rare disease studies. Luckily, there are programs that exist to help with the financials, such as the "Clinical Studies of…
A recent study conducted by the Penn State College of Medicine revealed that taking glucagon-like peptide-1 receptor (GLP-1R) agonists six months before COVID-19 infection decreases the risk of a severe…
A new collaboration between the University of Texas's MD Anderson Cancer Center and the Rare Cancer Research Foundation aims to solve a problem that has been a major obstacle for…
Long QT syndrome (LQTS) is a rare condition that's characterized by fast and chaotic heartbeats. Episodes have the potential to cause fainting, seizures, or even death. Because of this, affected…
It's a beautiful thing when a community pulls together to support one of its members. This is exactly what the Madeira community is doing for 16-year-old Diego Ramirez. He recently…
Lytle, Texas is a small town located outside of San Antonio. Recently, the entire community came together to support a young boy living with autosomal recessive polycystic kidney disease (ARPKD).…
Alan Jackson has been a big part of the country music scene for a long time, with songs like Remember When and Livin' On Love. Recently, he revealed to his…
Having a rare disease can feel isolating. Many people have never even heard of your condition, much less know anything about it. This is even a problem with doctors. Despite…
It's no secret that COVID-19 can cause lasting effects on those it infects. Over the course of the pandemic, we've learned a lot more about this virus, including its connection…
Funding is a problem that many rare diseases face when it comes to research. Cholangiocarcinoma, also known as bile duct cancer, is no exception. Because of this, it is often…
Nucala has already been approved in Europe as an add-on treatment for patients with extreme eosinophilic asthma. Now, the EMA's Committee for Medicinal Products for Human Use (CHMP) has recommended…
COVID-19 has brought attention to a rare condition that has been flying under the radar for years: chronic fatigue syndrome (CFS). With more attention, people are more willing to share…
There are inequities when it comes to race in the medical sphere, just as there are in every other facet of life. One specific issue pertains to clinical trials, as…
Many rare diseases face issues when it comes to awareness, we know this. Low patient populations, minimal research, and little knowledge all contribute to this problem. One father aims to…
Recently, hundreds of people celebrated the 12th Annual Fara 5k in Providence, Rhode Island. This race was organized over a decade ago in an effort to raise money for Friedreich…
Angela Singletary is the proud mother of three children: Aidan, DL, and Angela. One of them sticks out from the rest - literally. DL is a foot and a half…
After a case of the rare tick-borne illness, Powassan virus, was reported in Providence, Rhode Island in June, Patch released an article detailing the different diseases ticks can carry, how…
According to a recent article published in The Online Trading Mentor, Inventiva S.A. (Inventiva) has recently opened enrollment for its Phase 3 trial of Lanifibranor, an investigational treatment for nonalcoholic…
There are so many fun activities to do in the great outdoors, especially when the weather is nice. Whether it's going on a scenic hike, having a picnic in the…
There are now plans in place to study a gene therapy for GNE myopathy (GNEM), with human dosing expected to begin in 24 months. The plans were developed by the…
Living with an invisible illness can be difficult for a myriad of reasons, one of which is awareness. Those affected by vestibular disorders know this all too well. The word…
Astellas Pharma has seen their ASPIRO trial put on clinical hold for the second time after the fourth patient passed away. The Phase I/II trial is evaluating AT132, a potential…
Understanding the driving factors behind a condition is necessary for the development of effective treatments. A recent study has advanced our understanding of preeclampsia, a rare complication that impacts five…
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