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…
According to a recent article, researchers investigated the cause of deaths in the hospital in patients who were diagnosed with inflammatory myositis in a tertiary care center in Northern…
According to an article published by Alnylam Pharmaceuticals, a recent survey has provided insight into the burden experienced by acute hepatic porphyria (AHP) patients. Titled the POWER (POrphyria Worldwide Patient…
Thanksgiving is a time of gratitude, family and maybe a little gluttony. It was always my favorite time of the year in high school and college. Now, while I still…
When you are looking for new treatments that will either stop or slow the development of Alzheimer’s disease, where would you look? According to a recent article in Gladstone…
At this time last year, I was 89 lbs and at the beginning stages of recovery from a year of IV and oral antibiotics for the treatment of Lyme disease.…
CRISPR is a gene-editing technique that has revolutionized the medical world with its approach to making precise changes in DNA. CRISPR found its match in 35-year-old Victoria Gray of…
According to a recent article, PharmaTher Holdings Ltd. announces the FDA granted orphan drug designation (ODD) for ketamine in the treatment of complex regional pain syndrome (CRPS). Complex Regional…
According to a recent article, mental health affects the physical body in a number of ways, and it’s important to recognize and understand this connection. Mental health has such a…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
The FDA, the NIH, 5 nonprofits, and 10 pharmaceutical companies, have formed an official partnership to accelerate gene therapy development for rare diseases. Out of 7,000 known rare diseases, just…
The Vestibular Disorder Association (VeDA) has just published a guide to handling the holidays when you are a vestibular patient. Holidays can be a challenge because of overstimulation, fatigue, high…
Dr. Farah Naz Khan’s recent article for GoodRx Health attempts to explain the difference between Hashimoto’s disease and hypothyroidism. The terms are used interchangeably but Dr. Khan’s article explains…
Because it is Thanksgiving, the Patient Worthy team asked me to share my thoughts on gratitude. Some among us might think it would be a daunting assignment. After all, I have a…
A recent article from The Sun told the story of how a husband was forced to make an impossible choice between his wife and unborn child after she prematurely…
According to a recent article from BioSpace, Boston’s Children Hospital was granted $308,000 to advance their multidisciplinary biomarker work. SYNGAP1 Syndrome SYNGAP1 syndrome is a neurological disorder that is characterized…
The Times Now News recently featured an article that highlighted a study by a group of NYU Langone scientists. The study paper was published October 6th, 2021 in the…
As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…
The Rare Disease Diversity Coalition and Global Genes have recently established a new partnership. This partnership aims to help find solutions to help address outcome disparities faced by people of…
According to a recent article from Medscape, Takeda Pharmaceuticals is offering a rebate for brigatinib (Alunbrig) which is used for the treatment of non-small cell lung cancer. Non-Small Cell Lung…
A recent article from Healthline highlighted the similarities and differences between two neurological diseases, myasthenia gravis (MG) and multiple sclerosis (MS). Myasthenia Gravis Deriving from the Greek and Latin words…
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GIVLAARI has already received approval for the treatment of acute hepatic porphyria (AHP) in Canada, according to an article from Nasdaq. Now, the Canadian Agency for Drugs and Technologies in…
According to a late October 2021 news release from biopharmaceutical company Mereo BioPharma Group plc ("Mereo"), the company's therapeutic candidate alvelestat received Orphan Drug designation from the FDA. The therapy…
According to a recent article, investigators created a machine learning model in order to identify if patients are at risk of rare cardiomyopathy. Transthyretin Amyloid Cardiomyopathy (ATTR-CM) Transthyretin amyloid cardiomyopathy…
A recent article highlighted the fact that November is carcinoid cancer month and is helping spread awareness about the disease in the hopes of earlier diagnosis. Carcinoid Syndrome Carcinoid syndrome…
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