684 words, 9% matched vs 1,329 words, 4% matched Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong…
According to a story from mdlinx.com, a recent study has found that around 20 percent of sudden cardiac death cases in US adults can be linked to pathogenic arrhythmia syndromes…
As of June 7, 2021, an injectable treatment is now available for patients aged 1 month+ with paroxysmal nocturnal hemoglobinuria. The FDA recently approved Ultomiris (ravulizumab-cwvz) for these patients. Previously,…
A 2019 Survey Found 70% of Patients with NMOSD Relapsed Every Year. According to a recent article in China Daily, the patients interviewed for this article said that their…
In early June 2021, SPG302, an investigational therapy for patients with amyotrophic lateral sclerosis (ALS), received Orphan Drug designation from the FDA. According to ALS News Today, the treatment…
As reported in Biospace; the clinical-stage biotech company Nanoscope Therapeutics, Inc. has announced a resonating gene therapy success: all participants with advanced retinitis pigmentosa (RP) maintained vision improvements a year…
From June 2-5, 2021, the European Alliance of Associations for Rheumatology (EULAR) held its EULAR 2021 Virtual Congress. During the event, participants discussed basic, translational, and clinical science within the…
According to a story from Parkinson's News Today, an approach called whole-body electromyostimulation (WB-EMS) was able to benefit Parkinson's disease patients in a small scale study. These patients were not…
According to a recent news release from biopharmaceutical company Arena Pharmaceuticals, Inc. ("Arena"), the company's investigational therapy, etrasimod, received Orphan Drug designation from the FDA. Currently, Arena is evaluating etrasimod…
It's no secret that COVID-19 can cause lingering symptoms, some of which persist for months. In fact, there is a name for those who deal with the lasting symptoms of…
For decades, it has been clear that diet plays a role in overall health. But can diet also play a role in whether or not you develop certain conditions -…
The month of June is recognized as CDKL5 Awareness Month, a time set aside to spread awareness about CDKL5 deficiency disorder among the general public and the medical community. June…
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…
Rare Bears started out as a small effort to support children with rare diseases. Now, it is a global non-profit that has an army behind it. This organization makes one-of-a-kind…
Charcot-Marie-Tooth disease (CMT) is associated with a number of genetic mutations. In fact, the different mutations signify specific CMT subtypes, such as CMT1 or CMT3. According to Charcot-Marie-Tooth News,…
The month of June is recognized as Scleroderma Awareness Month, a time for spreading awareness about the rare disease scleroderma in the medical community and among the general population. This…
For all the coffee lovers who drink as much coffee as I do each day, this one's for you. Recently, a press release from the Icahn School of Medicine at…
Robbie Elliot’s family, who reside in South Shields, England describes him as a perfect boy with a bubbly personality, always giving, and with a special love of music. According to…
Pfizer’s Regional President for Rare Disease, Reda Guiha, recently offered his opinion to The Parliament magazine about the urgency of what he refers to as the ‘rare disease crisis.’ Pres.…
A recent study investigating treatment for adult acromegaly patients has revealed that switching from injectable somatostatin receptor ligands to oral octreotide leads to an improvement in quality of life and…
Have you ever heard of base editing? This relatively new technology within the field of genome editing offers the potential opportunity to treat a variety of genetic conditions. According to…
ACADIA Pharmaceuticals has released data on NUPLAZID, a selective serotonin inverse agonist and antagonist preferentially targeting 5-HT2A receptors. This treatment is meant to treat Parkinson's disease patients, specifically the delusions…
According to a story from bbc.com, five month old Arthur was born with the rare disease spinal muscular atrophy (SMA). He is one of the first people in the UK…
According to a story from MedPage Today, a recent study has determined the familial hypercholesterolemia (FH) can often go undetected on genetic tests that rely on arrays. As an example,…
Intravenous immunoglobulin, or IVIG, is a therapy used for an array of autoimmune conditions. It has anti-inflammatory properties which help support many diseases. Recently, researchers have demonstrated the potential of…
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