Believe it or not, it wasn’t until final exams my freshman year in college that I heard the term “stressed out.” It just wasn’t used that often back then. Nor…
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…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Rare Disease Week this year was July 14th-22nd and held virtually. With over 600 participates advocating for those living with a rare disease diagnosis and 250 patient organizations, this event’s…
Today’s report on compassion describes it as the resolve to serve others. This article, published by the Schwartz Healthcare Center in Cambridge, Massachusetts, features Victor Furtado, Security Director at NewBridge…
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…
According to a recent article from CoventryLive, the nonprofit Meningitis Now is warning students and those going back to work to not make assumptions when they become ill. Students…
Disruption in clinical trial procedures can be added to the list of changes that have occurred since the start of the pandemic in 2020. The clinical trial sites had always…
Homologous Recombination (HR) gene mutations play a role in genomic stability and plasticity, and sometimes work to repair cellular DNA damage. These mutations cause genetic information to be shared between…
An article recently appeared in the AAMC News celebrating the creation of The Children’s National Rare Disease Institute (CNRDI). The article described the long road patients with rare diseases must…
A recent study investigated the lingering effects of sleep deprivation in healthy adults. This study was conducted by Jeremy Ochab from Poland, alongside his colleagues. Sleep Deprivation Sleep deprivation or…
Jordana Rothschild, M.D. recently contributed an article to KevinMD discussing the perception that patients have about their doctors. Dr. Rothschild believes that the system we have created gives people the…
Rare diseases often need extra support when it comes to research and drug development. Luckily, MMS Holdings Inc. (MMS) plans to provide some with their new support program. The program,…
Clinical trial recruitment has always been challenging. It is especially challenging for therapies being tested for rare diseases, an already small population. Clinical trials for rare diseases are small out…
A recent study conducted by researchers at the Broad Institute of MIT and Harvard University uncovered that a small group of cancer cells is responsible for recurrence. Considering that most…
Genetics play a huge role in health and disease development. Certain genetic mutations are associated with the development of specific conditions; for example, DMD gene mutations cause Duchenne muscular dystrophy.…
Patient Worthy was pleased to serve on the advisory committee for the development of this new resource. Caring for a child with a rare disease can be scary and confusing;…
The National Organization for Rare Disorders (NORD) has been a leading patient advocacy organization since the 1980s, helping advance the identification, treatment, and cure of rare disorders. In October 2021,…
Rare disease patients often face more obstacles and receive less aid than those impacted by more common conditions. There are many reasons for this inequity, but more research must be…
Developing therapies for rare diseases can be difficult, and it often requires effort from many different players. Recently, AllStripes has made large steps forward in rare disease research by securing…
During clinical trials, the FDA may sometimes order a clinical hold. This order is often given to halt or suspend trial operations if the FDA believes that participants would…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
When Caren was eighteen years old her parents were, in fact, given two options. If they were unwilling to consent to a lobotomy, Caren would remain in the dark ward…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this event is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
The month of August has been recognized as Autoinflammatory Awareness Month since 2015. This event is centered on spreading awareness about autoinflammatory illnesses among the medical community and the general…
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