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…

Rare, Simultaneous NMOSD Diagnosis Seen in Identical Twins

A case report has detailed the clinical journeys of two identical twin sisters’ simultaneous diagnosis with neuromyelitis optica spectrum disorder (NMOSD), a rare occurrence. NMOSD was last reported in identical twin sisters in 1938, but those girls’ symptoms started two years apart,  unlike the present case. The case report,…

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…

Phase 2 Trial of Oral Therapy Orelabrutinib Set to Launch in China

InnoCare Pharma will soon launch a Phase 2 clinical trial in China to test orelabrutinib, its oral investigational Bruton tyrosine kinase (BTK) inhibitor, to treat neuromyelitis optica spectrum disorder (NMOSD). The announcement comes after China’s National Medical Products Administration approved the company’s request to conduct such a trial,…

#RAREis Representation Program Promotes Equity, Diversity

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…