A recent article in the journal Nature elaborated on the work of Dr. Ted Love who left early retirement in 2013 to devote his talents and experience to the development…
According to a story from Religion News Service, Gurjot 'Jo' Kaur has developed a reputation as a potent civil rights lawyer. Her career was motivated by experiences such as ableism…
When AJ Blinn, now age 12, was just 8 years old, his parents noticed something potentially concerning. As AJ was walking around, he was also limping. Eventually, his parents took…
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…
October 30, 2021 will be recognized as World Hypophosphatasia Day, a time dedicated to spreading awareness among the medical field and the general public about hypophosphatasia, a rare and potentially…
We know to be wary of ticks during the summer; it's when we spend the most time outdoors and the weather is at its best. But did you know that…
In 2019, Nathan James Bryan was 31 years old. He enjoyed drinking beer with his friends, working out, and spending time with his family. In fact, he had been staying…
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…
Throughout my daughter Kelley’s 45-year life with a rare disease, there were numerous times that we needed to either call 911 or take her to the Emergency Department at a…
According to an article recently published in WhoTrades, Dupixent has recently been assessed in a clinical trial for the treatment of uncontrolled prurigo nodularis in adult patients. The data were…
In the past, psoriatic arthritis (PsA) has been relatively difficult to manage or control with current therapies such as biologic disease-modifying anti-rheumatic drugs (bDMARDs). While some patients respond well to…
When a 23-year-old woman, who was 6 weeks pregnant, first appeared at the doctor, she was presenting with non-specific symptoms: pale eyelids, abdominal pain, intermittent cramping, and generalized arm and…
Currently, a glioblastoma multiforme diagnosis comes with a relatively poor prognosis: 25% survival after 1 year, and 5% after 5 years. Researchers have been looking to not only expand their…
Climate change is an issue that has seen a lot of activism from the younger generations, as they will have to grow up and handle more of the burdens it…
The 2nd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgia Encephalomyelitis was recently held in August 2021. This conference was a place for researchers to present work which…
Anaphylaxis, which is usually caused by an allergic attack or an insect bite, is a rapidly occurring episode and may be fatal. According to an article published in Mastopedia, due…
Dr. Bakris, Dr. Agarwal, Dr. Wright, and Dr. Minkoff have recently come together to discuss how they assess kidney function and ultimately diagnose chronic kidney disease (CKD). Assessing Disease Severity…
On October 25, 2021, Rare Disease Legislative Advocates (RDLA) held a virtual briefing for the Rare Disease Congressional Caucus. The subject of this briefing was newborn screening and ongoing discussions…
From October 6-7, 2021, researchers and stakeholders descended upon the virtual Northeast Amyotrophic Lateral Sclerosis Meeting to discuss new trends, research, and therapies within the field. According to ALS News…
On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN). "...a flagship CRDN event gathering over 300 great minds…
Collaboration can be extremely important when it comes to developing treatments, especially for rare disorders. Sharing information, technology, and expertise can lead to therapies that otherwise might not have seen…
According to a recent news release, the first cohort - consisting of healthy volunteers - was dosed in a Phase 1 clinical trial evaluating an intranasal formulation of 5-MeO-DMT. Ultimately,…
When drug developers receive marketing approval in different countries, they expand medication access and allow patients across the globe to have better treatment. According to Korea Biomedical Review, Korea recently…
A rare disease diagnosis changes your life. As I look back on eight years of twin anemia polycythemia sequence and its impact on my girls, I also have to reflect…
Three doctors recently got together to discuss how they manage care for their sickle cell disease (SCD) patients. As a part of this conversation, they discussed how they combat systemic…
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