News

Continuous Forsteo Effective for Case of Severe Hypoparathyroidism

In a woman whose severe hypoparathyroidism did not respond to standard treatment, constant infusion of a lab-engineered form of the parathyroid hormone (PTH) eliminated symptoms and improved her quality of life, a case study from Portugal reports. This medication, called Forsteo (teriparatide) and marketed in the U.S. as…

Group Focuses on Rare Disease Clinical Trial Participation

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…

Register Now for Global Genes’ RARE Patient Advocacy Summit

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

Stable Post-surgery Supplement Doses Can Take Months to Determine

Typically, it takes nearly three months before people newly diagnosed with chronic, post-surgical hypoparathyroidism arrive at a stable dose of calcium and vitamin D supplements, a study reported, rather than several weeks. But many patients in this study also experienced abnormally high or low calcium levels even after a stable dose…

NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…

PTH Levels in Children Soon After Surgery Show Risk of Hypocalcemia

Assessing parathyroid hormone (PTH) levels in children after surgery to remove the thyroid gland, and beginning preventive therapy to those at high risk of hypocalcemia, increased safety and shorted their hospital stay, a study reported. Hypocalcemia, or potentially harmful low calcium levels, is a frequent complication of surgery to remove…