News

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…

Visen Set to Start Phase 3 Trial of TransCon PTH in China

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,…

Encaleret for Rare ADH1 Gets FDA Fast Track Designation

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…

Town Hall Meeting, Events Mark World Hypopara Awareness Day

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 in Kidneys Common in Hypoparathyroidism

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…

Ascendis Asking to Open TransCon PTH Trial for Adults in Japan

Ascendis Pharma is requesting regulatory permission to open a Phase 3 clinical trial in Japan, part of its program to assess TransCon PTH as a hormone replacement therapy for adults with hypoparathyroidism at sites worldwide. Ascendis filed a clinical trial notification (CTN) for what it will call the PaTHway Japan…