News

Europe Awaits Proposed New Framework for Sharing Health Data

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…

Community Invited to Share Stories for Fabry Awareness Month

Members of the Fabry disease community are invited to share their stories — those of patients, caregivers, family members, and advocates — and to use social media to celebrate Fabry Awareness Month this April. For this year’s campaign, the global Fabry International Network, known as FIN, has launched…

Fabrazyme Biosimilar Marketed in Japan Under New Agreement

JCR Pharmaceuticals and Sumitomo Dainippon Pharma have teamed up to market and commercialize in Japan agalsidase beta BS, a biosimilar of Fabrazyme, an already approved treatment designed to replace a critical enzyme missing in people with Fabry disease. According to a company press release, “This…

Increased Education Crucial to Improving Rare Disease Care, Survey Finds

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…