News

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…

Advocates Lobby US Congress During Virtual Rare Disease Week

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…

Worse Cardiovascular Disease Seen in Chronic Hypoparathyroidism

People with chronic hypoparathyroidism have a higher risk of disorders affecting the heart and blood vessels — known as cardiovascular disease — compared with those without the rare endocrine system disorder, according to a large-scale analysis of a medical claims database. “Further studies are warranted to investigate reasons for…

Nominations Open for 2022 Eurordis Black Pearl Awards

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

Study Points to Risk Factors for Post-surgery Hypoparathyroidism

Being female, thyroid size, and having to undergo a second surgery are associated with the occurrence of short-term hypoparathyroidism following removal of the thyroid, according to a recent study. Risk factors for long-term hypoparathyroidism, the study also found, include thyroid size and low levels of the parathyroid hormone (PTH)…

Permanent Hypoparathyroidism Can Take Year or More To Be Evident

Recovery of parathyroid function can take more than a year after thyroid gland removal, suggesting that longer follow-up periods could be needed to accurately diagnose permanent hypoparathyroidism, a study reported. Its researchers followed patients who didn’t quickly recover for an average of 28 months after surgery in making a determination.