According to a recent article, a new study shows that granulomatosis with polyangiitis (GPA) and tuberculosis might have shared features, making diagnosis more difficult. Granulomatosis with Polyangiitis (GPA) Granulomatosis with…
The CDC has published a warning concerning a rare disease called meningococcal disease spreading in Florida. So far in 2022, the number of documented cases has surpassed the five year…
Earlier this year, the MHRA in the United Kingdom expanded the license for Kaftrio, a treatment option for patients with cystic fibrosis (CF). When this expansion occurred, allowing for the…
According to a recent article, at the American Academy of Neurology annual meeting in 2022, the importance of disease-modifying therapies for patients diagnosed with rare pediatric disorders was highlighted. Lisa…
There are numerous ways to find treatments for rare diseases, with the major method that springs into everyone's minds being clinical trials starting from scratch. However, in many cases, drugs…
Fibromyalgia is a condition that is characterized by fatigue, memory issues, and musculoskeletal pain. It is also associated with depression, anxiety, and irritable bowel syndrome (IBS). Symptoms of fibromyalgia include…
Understanding rare diseases is integral in treating them. In order to do so, research into the underlying causes and factors behind these conditions is needed. A recent study published in…
Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia. Dystonia Dystonia is a chronic movement disorder, existing in the same family as the more…
Unfortunately, there are a number of racial and ethnic disparities in healthcare which position certain groups for poorer outcomes. For example, Black individuals often have lesser access to adequate medical…
According to a recent article, a child with biliary atresia was able to celebrate her first birthday following her liver transplant. Biliary Atresia Biliary atresia is a condition occurring in…
According to a recent article, a new study is demonstrating how the effects of distal renal tubular acidosis impact a patient’s quality of life. Distal Renal Tubular Acidosis (dRTA) Distal…
Theravance Biopharma Inc. has just released results from their 2nd Phase 3 investigation of Ampreloxetine as a therapy for symptomatic neurogenic orthostatic hypotension (nOH). Symptomatic nOH NOH is a rare…
Dr. Christopher Austin, a National Institute of Health Director for Transitional Sciences, spoke at last year’s virtual conference honoring Rare Disease Day. According to an article in the NIH Record, Dr.…
Many of us are familiar with the famous story written by Roald Dahl titled Charlie and the Chocolate Factory; we know the tale of the golden ticket and Charlie's journey to…
When Isabel Blevins was just 16 years old, she caught the flu. While she recovered well at the time, her health seemingly went downhill after this incident. Suddenly, Isabel was…
Each year, there are an estimated 220,000 new cases of cryptococcal meningitis. Unfortunately, researchers hypothesize that this results in over 100,000 to 180,000 deaths; many of these are in those…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
There are multiple factors which may play a role in the development of cerebral palsy, a neurological movement disorder. This condition can be caused by injuries to the brain at…
Ashley O’Keefe is a proud mother of three and a nurse, so she's seen her fair share of children and health problems. So when her third child was born, she…
According to a recent article, scientists have discovered that epigenetic landscapes have a big role in the way cancer cells potentially respond to therapy initially. “Persisters” There are cancer cells…
Korea began its use of effective therapies for idiopathic pulmonary arterial hypertension (IPAH) early in 2000. Idiopathic hypertension has no apparent cause. Yet there have been very few studies assessing…
In 2018, Ethan Lambert was born. His parents, Kassondra and William, were thrilled with the new addition to their family. For the first year, Ethan seemed to be developing fairly…
Maria’s message is: “when in doubt, get a biopsy." Ten years ago, Maria Sylvia noticed a vertical streak on her thumbnail that at the time she thought was “cool." She…
In the past, certain research has suggested a relationship between the use of therapies like TNF inhibitors, tocilizumab, and tofacitinib, and a heightened risk of Alzheimer’s disease (AD) or dementia.…
According to a recent article, LUNGevity has just launched a resource platform that provides information, news, and community for patients diagnosed with ALK-positive lung cancer. ALK Positive Lung Cancer Anaplastic…
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