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…
Some mutations in non-coding regions of the calcium-sensing receptor (CASR) gene change the function of the resulting protein and are associated with hypoparathyroidism, a study suggests. While mutations in non-coding regions — DNA sections that do not provide instructions to produce a protein — do not directly alter the…
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…
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 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…
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)…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
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.
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
In people with hypoparathyroidism caused by thyroid gland removal, the combined levels of magnesium and phosphorus in the blood best predicted the short-term return to normal parathyroid function, a study reported. Short term was defined by its researchers as a return to normal within 30 days of a thyroidectomy (surgical…
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