Calls for SMA screening ignored before Jesy Nelson campaign, say families
Newborn screening for spinal muscular atrophy type 1 is urgently needed as families face diagnosis delays and feel advocacy has been ignored despite government attention.
Daily briefing: NIH still uses directives deemed illegal to screen grants
The US National Institutes of Health (NIH) has not yet rescinded directives that led to the cancellation of more than 2,400 research projects it funded, despite a ruling declaring them illegal.
I pioneered my country's newborn health-screening programme
Automated newborn health-screening significantly reduces the risk of undetected conditions, yet 70% of infants globally remain without access to such vital tests.