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The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
Daily treatment with AZP-3601, Amolyt Pharma’s investigational therapy for hypoparathyroidism, was well tolerated and allowed patients to discontinue standard supplement treatment, early data from a Phase 2a trial show. The treatment also rapidly normalized 24-hour urine calcium levels and improved bone health. The findings, from a first group of…
Late recovery — longer than six months — from post-surgery hypoparathyroidism is not uncommon, and having levels of parathyroid hormone (PTH) within the normal range may indicate whether patients are more likely to recover, a study found. “PTH is a useful biomarker in predicting long-term recovery of parathyroid function,”…
Severe COVID-19 could lead to the development of temporary hypoparathyroidism, a case report suggests. This report represents the third case of hypoparathyroidism secondary to severe COVID-19 infection noted in scientific literature. These rare instances, along with previous reports showing that the virus may worsen previously well-controlled hypoparathyroidism, highlight…
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…
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