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When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience. Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…
While people with hypoparathyroidism receiving conventional treatment with supplements experience significant declines in kidney function over time, the replacement therapy Natpara appears to preserve kidney function in the long-term, a five-year analysis shows. The study, “5-Year Estimated Glomerular Filtration Rate in Patients with Hypoparathyroidism Treated…
People with hypoparathyroidism experience extensive changes in bone microstructure compared with the general population, a pilot study revealed. Such changes appear to be more prominent in patients whose disease has a cause other than surgery. Factors such as age, menstrual status in women, and treatment duration in men…
Low vitamin D levels increase the risk of temporary hypocalcemia, or low blood calcium levels, and hypoparathyroidism following surgery to remove the parathyroid glands, a study found. The study, “Preoperative Vitamin D Levels as a Predictor of Transient Hypocalcemia and Hypoparathyroidism After Parathyroidectomy,” was…
People with hypoparathyroidism, particularly if they developed the condition after surgery, experience worse patient-reported mental health than healthy individuals, a study reports. The study, “The effects of patient and disease-related factors on the quality of life in patients with hypoparathyroidism,” was published in the journal…
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…
ProLynx has been awarded a small business innovation research grant from the National Institutes of Health (NIH) to develop its long-acting parathyroid hormone (PTH) therapy — known as PTH(1-34) — for people with hypoparathyroidism. Hypoparathyroidism is an uncommon condition characterized by low levels of PTH,…
People with hypoparathyroidism whose disease cannot be sustainably controlled with conventional treatment and parathyroid hormone (PTH) infusions may benefit from a continuous PTH infusion using an insulin pump, a case series suggests. The approach was found to be safe and to control the disease for 5.5 years or…
People who undergo surgery to remove the entire thyroid gland have a much higher incidence of chronic hypoparathyrodism than previously reported, with younger patients and those with so-called toxic thyroid disease at particular risk, a study in Denmark found. The study, “High incidence of…
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…
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