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…
Recently the Kidney Cancer Association held its International Kidney Cancer Symposium, where medical professionals and other industry members come together to share ideas and push for innovative research and treatments…
A Tyler, Tx artist, mother, wife, and friend has her community rallying behind her in her fight against oligodendroglioma, a primary central nervous system cancer. According to the Tyler Morning…
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…
According to a recent article in Biospace, Eisai Pharmaceutical and Biogen Biotechnology recently announced updates to their Phase IIB study 201 and a five-year open-label extension (OLE) studies using lecanemab…
Platinum-based chemotherapy has been the standard treatment for patients with metastatic gastric adenocarcinoma for over ten years. According to a recent article in Healio, the median survival is about nine…
Orphan Drug designation in the United States is granted to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions, defined as those affecting under 200,000 Americans.…
Currently, there are no therapeutic options available for patients with myotonic dystrophy type 1 (DM1). However, that may soon change. According to Marketwatch, the FDA recently granted Fast Track…
In 2019, the United States approved Vumerity (diroximel fumarate) to treat adult patients with relapsing-remitting (R/R) multiple sclerosis (MS). Now, two years later, the European Union has approved this…
Written by Dr. Lauren Steddum So far in 2021, more than 54,000 people have been diagnosed with oral cavity and oropharyngeal cancer and nearly 11,000 people have died of the…
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