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A recent study aimed to uncover the incidence of osteomyelitis in Germany. The researchers explain that because the epidemiology of the disease is unknown, it is hard to estimate the…
Rare disease patients often face more obstacles than others when it comes to healthcare. While we know this, it can be hard to judge the public's stance on the issue.…
When Stephanie Ernst-Milner first discovered that she was having twins, she was speechless. But what she learned over the course of her pregnancy, and in the seven years since, has…
The Quincy community is helping to organize a bone marrow registry drive for a local teen who was recently diagnosed with hemophagocytic lymphohistiocytosis (HLH), according to an article in The…
As reported in PR Newswire, Alcyone Therapeutics is launching a new set of precise gene therapies for CNS disorders with the help of a new $23 million investment from RTW…
States are not able to alter patent protections or set prices but Colorado is no longer waiting for the federal government to act. According to a recent article in…
WLNS Brooklyn Michigan is sharing news about Jaxon Meschke, a four-year-old boy with a rare disease called cystinosis. Jaxon’s body has been fighting the disease since he was six…
As seen in PR Newswire, researchers at the biopharmaceutical company OxThera AB have spent 52 weeks studying 25 patients with primary hyperoxaluria (PH), a rare disease that progressively damages the…
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…
Ahead of Cystic Fibrosis Week in the UK, 37-year-old Marc Cotterill, who lives with the disease, has given a video presentation to the European Cystic Fibrosis Conference on the theme…
Mobility issues are common in patients with osteogenesis imperfecta (OI) - especially tendinopathy, or tendonitis. But why does this happen? According to Medical XPress, a study performed by Baylor College…
For years, researchers have been evaluating pridopidine, developed by Prilenia Therapeutics ("Prilenia"), as a potential therapy for patients with neurodegenerative conditions. As reported in HD Buzz, new research has highlighted…
Liver cancer has been one of the leading causes of cancer-related deaths. A recent article in HemOnc Today reports that liver cancer is perhaps one of the most difficult cancers…
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…
Although it is still considered an experimental technique, gene therapy shows promise for treating a wide variety of genetic diseases or disorders. In a recent news release from the Sanford…
Over the past few years, Elmiron (pentosan polysulfate sodium, "PPS"), a therapy designed to treat patients with interstitial cystitis (IC), has been associated with potential vision damage. Despite a variety…
In a press release by Parkinson's Canada; researchers in Canada wanted to unpack why some people first lose their sense of smell before developing Parkinson’s disease with age. While losing…
We still don't fully understand a number of rare diseases. A lack of awareness, lack of interest, and lack of funding all play a role, and medical professionals simply can't…
Researchers from the University of Lausanne and the Wellcome Sanger Institute have just published a new study in Molecular Systems Biology which uncovered how DNA can overcome genetic changes which are…
From June 5-8, 2021, the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) held its 58th Annual Virtual Meeting. Due to COVID-19, the meeting was held fully online. However, that…
Some conditions or diseases are more prevalent in certain groups. In the case of idiopathic intracranial hypertension (IIH), new research suggests that it is much more common in Black or…
Normally, cerebrospinal fluid (CSF) surrounds our brain and spinal cord, providing numerous benefits from injury protection and nutrient delivery to waste removal. Hydrocephalus, or "water on the brain," occurs when…
Many rare disease patients are familiar with high prices for treatment. In fact, the most expensive medication in the world treats a rare disease: Zolgensa, a gene therapy for spinal…
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…
Evoke Pharma focuses on gastrointestinal disease treatments. Eversana helps to provide commercial services for the life science industry. The two companies have just joined together to launch a social media…
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