News

The International Osteoporosis Foundation (IOF) recently launched Skeletal Rare Diseases Academy, recognizing two researchers with awards for their work in hypoparathyroidism-associated bone changes and pregnancy outcomes. The awards, intended to recognize research excellence among young scientists in the field of rare bone disorders, were announced recently during…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

Thyroid cancer, central neck surgery and the incidental removal of parathyroid tissue raise the risk for hypoparathyroidism in children after total thyroid removal, according to a study. Yet, the risk of permanent hypoparathyroidism is low. The study, “Postoperative Hypoparathyroidism After Total Thyroidectomy in Children,” was…

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…

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…