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…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
Visen Pharmaceuticals has obtained regulatory clearance to start the PaTHway China Trial, a Phase 3 study of TransCon PTH as a hormone replacement therapy for people with hypoparathyroidism in China. The approval from China’s Center for Drug Evaluation of the National Medical Products Administration came on June 1,…
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…
The U.S. Food and Drug Administration has granted fast track designation to encaleret, an investigational therapy for autosomal dominant hypocalcemia type 1, called ADH1, a rare genetic form of hypoparathyroidism. Encaleret is designed to help normalize the calcium levels of ADH1 patients by blocking the calcium-sensing receptor…
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…
From buying virtual lemonade drinks to participating in a town hall meeting, the hypoparathyroidism community is poised to mark World Hypopara Awareness Day, observed each June 1. Patients, caregivers, and advocates worldwide are invited to participate in the event aimed at heightening awareness among the general public, as well…
Calcium deposits — known as calcifications — in the kidneys and higher-than-normal levels of calcium in urine are common in people with chronic hypoparathyroidism, according to a small Danish study. Notably, the presence of these calcifications was neither significantly associated with the levels of calcium in the urine or…
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