"Rare" is a documentary that gives its viewers a glimpse into the world of rare diseases, something that many people know little about. Until now, the project has been funded…
Ticks can carry a variety of infectious pathogens. Once the ticks bite humans, humans can then be infected with illnesses ranging from babesiosis and Powassan disease to Lyme disease. Now,…
Patient Worthy recently had the privilege to view a selection of short films about rare disease at Biotech Week Boston. These films highlight the stories of families and patients as…
When we are faced with a limiting health issue where performing “simple” everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…
Have you ever had a panic attack? If so, you know how terrifying they can be. I have had plenty and know exactly what they are like…torture! There is good…
On September 21, 2021, Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. The focus of this webinar was newborn screening in recognition of Newborn Screening Awareness Month, which is…
According to a recent news item that appeared on The Denver Channel, we are now in the age of genetic research that could have an impact on the lives of…
In the past, researchers believed that Valley Fever, a fungal disease caused by coccidioides fungus, was mostly found in the southwestern United States, as well as areas in Mexico and…
Medical research drives a huge amount of our understanding around rare diseases. Recently, researchers from Brown University performed a study to deepen their understanding of a rare, X-linked genetic disorder…
When you think of effective fundraisers, do you think of pickleball? Well, a Kansas community did just that. According to a video and transcript on KMBC News 9, his community…
From certain partnerships can emerge not only a better understanding of rare diseases but potential therapeutic options. As described by BioProcess International, a nonprofit organization called the Institute for Life…
According to a recent article at Medical XPress, the number of intensive care units around the world overwhelmed by critically ill patients suffering from COVID-19 leaves organ transplant patients with…
Part II And Finally, Maguire and colleagues also reported on the care of NAS infants and found three areas somewhat similar to the last two reports. The team reported concern…
Part I This is the first of a two-part series on ‘compassion fatigue' and burnout in an area of nursing that, over the years, has seen a significant increase in…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
