News

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

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…

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…