Patient Worthy is excited to announce that this Saturday a solidarity concert will be held in Noáin in favor of Dravet syndrome. United by the Dravet through Ranchera Music…
According to a story from Yahoo! Finance, EUSA Pharma Limited and BeiGene, Ltd. have recently announced that their Biologics License Application (BLA) has been accepted by the China National Medical…
In early January 2021, biopharmaceutical company Avidity Biosciences ("Avidity") announced updates from its 2021 pipeline. Currently, Avidity is working to create a line of Antibody Oligonucleotide Conjugates (AOCs), therapeutic options…
Sorafenib, a tyrosine kinase inhibitor, has been unbeatable for treating cancer of the liver for the past thirteen years. An article by the Cleveland Clinic stated that during that time,…
According to an article published in Medscape, guidelines for the treatment of valvular heart disease have changed. The American College of Cardiology (ACC), along with the American Heart Association (AHA),…
When breast cancer cells are biopsied, they are usually tested to determine if the cancer is hormone receptor-positive or hormone receptor-negative. Basically, if the cancer is hormone receptor-positive, estrogen and…
VeDA Vestibular Disorders Association (VeDA) is a nonprofit organization that was founded in 1985. Its goal is to raise awareness of vestibular conditions, improve early diagnosis, and advocate for more efficacious…
On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
Medical professionals have known for a long time that peripheral nerve cell damage plays a major role in Charcot-Marie-Tooth (CMT) disease. A recent study published in Human Molecular Genetics has suggested that…
Over the past decade, scientists have made many life-saving advances in all areas of medicine. They have created molecular agents to target neurodegenerative diseases. But they were stopped right there…
Oftentimes with cancers or rare conditions, there are subtypes of the cancer or disease. Breast cancer is no different. For example, a breast cancer diagnosis may encompass BRCA gene mutations or triple-negative…
On January 13, 2021, pharmaceutical company Marinus Pharmaceuticals, Inc. ("Marinus") shared via press release that the FDA gave the company a positive response following efficacy and safety data from the…
Welcome to study of the week, a new series from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is…
In a recent study, spearheaded by a team at the Postgraduate Institute of Medical Education and Research in Chandigarh, researchers determined that patients with non-cystic fibrosis (non-CF) bronchiectasis often had…
Research has shown that there is a relationship between type 2 diabetes and cardiovascular disease, an umbrella of diseases that include damaged blood vessels, blood clots, and other issues. In…
According to a story from newswise.com, a team of researchers from the University of New Hampshire may have discovered the next new treatment for a rare form of blood cancer…
Parent Project Muscular Dystrophy's (PPMD) goal is to end Duchenne muscular dystrophy (DMD), and they've just made another step in the right direction. They have recently announced the launch of…
Written by Gina Glass Like any parent of a child with a rare disease, my world was turned upside down when my daughter, Gia, was diagnosed with sickle cell disease…
If you have a rare condition and are also looking to start a family, you might question: how will my condition impact my pregnancy? Will I be able to have…
Researchers at Johns Hopkins School of Medicine noted that osteonecrosis (ON) is one of the more serious complications of systemic lupus erythematosus (SLE). According to a recent article in…
As reported in Newswise; 40% of people with primary progressive aphasia, a rare neurological disorder causing progressive language loss, also have underlying Alzheimer’s disease. However, while Alzheimer’s disease is characterized…
Much of our news in 2020 was filled with headlines around COVID-19, the viral pandemic which now has over 96.2 million global diagnoses. As we enter into 2021, the numbers…
Patient input is extremely important when evaluating treatments for rare diseases; Charcot-Marie-Tooth disease (CMT) is no exception. In order to understand the impact of different CMT therapies, researchers from the…
Have you ever heard a song and heavily related to it? As though it was speaking directly to you? This is how I felt when I first heard German singer-songwriter…
The medical community has been aware for some time now that patient involvement in his or her treatment is a critical part of therapeutic development. Biopharmaceutical companies acknowledge their obligation…
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