Chiesi Wins FDA Approval for First Drug to Treat Ultra-Rare Enzyme Deficiency

Chiesi Wins FDA Approval for First Drug to Treat Ultra-Rare Enzyme Deficiency

A Chiesi Farmaceutici drug for a rare enzyme deficiency is now approved by the FDA, making it the first U.S. treatment for a disorder that leads to a range of cognitive and muscle problems.
The regulatory decision announced late Thursday covers the treatment of children and adults who have alpha-mannosidosis (AM), a disease caused by a genetic mutation that leads to defective or inactive forms of an enzyme called alpha-D-mannosidase. Chiesi’s drug, velmanase alfa, is an engineered version of that enzyme. The privately held Italian company will market its new FDA-approved drug as Lamzede, the same name for the product in Europe,…

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STAR HIE Program Helps Unlock Powerful Public Health Data in West Virginia

STAR HIE Program Helps Unlock Powerful Public Health Data in West Virginia

ONC launched the Strengthening the Technical Advancement and Readiness of Public Health Agencies via Health Information Exchange (STAR HIE) Program in 2020 using funding from the Coronavirus Aid, Relief, and Economic Security Act (CARES Act). The program was expanded in 2021 to increase support for efforts to improve vaccination data sharing between jurisdictional Immunization Information Systems (IIS) and HIEs. The West Virginia Health Information Network (WVHIN) was among the 22 recipients that received a combined $20 million in funds from ONC via the CARES Act.We sat down with WVHIN’s Executive Director, Sonia Chambers, to learn how the STAR HIE Program helped…

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