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The dual transplant of a kidney and a parathyroid gland was safe and effective at restoring parathyroid hormone (PTH) levels and turning back kidney disease, in an 11-year-old girl with congenital hypoparathyroidism and renal failure, a case study reports. “Simultaneous living donation and transplantation of a kidney and a…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
Slower processing speed, or longer times to take in and use information, appear to be connected to lower blood calcium and higher blood phosphate levels in people with hypoparathyroidism, a small pilot study in the U.S. suggests. Because slower processing speeds can mean more time to complete day-to-day tasks,…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
A significant proportion of people with hypoparathyroidism reported quality-of-life impairments, which were associated with more symptoms and an inability to work, according to a recent German survey study. A lack of understanding about the disease from potential employers, physicians, and others also may underlie these declines in quality of…
The U.S. Food and Drug Administration (FDA) has rejected Takeda Pharmaceutical’s proposed changes to address the risk of rubber fragments detaching into Natpara’s cartridge that led to the therapy’s U.S. recall in 2019. This treatment for hypoparathyroidism involves puncturing the medication’s cartridge rubber septum — a disk…
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
Daily injections of TransCon PTHÂ can safely and effectively normalize calcium levels in the blood and urine and eliminate the need for conventional therapy in adults with hypoparathyroidism, according to six-month data from the Phase 3 PaTHway clinical trial. The long-acting hormone therapy, developed by Ascendis Pharma, was…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
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