General
When 11-year-old Sara was seriously ill, there was nothing; now she sits at the table with the prime minister: 'Time is pressing'
Eleven-year-old Sara Verbrugge, diagnosed ten years ago with the extremely rare muscle disease LAMA2-RD when doctors offered no treatment or information, will meet with Prime Minister Rob Jetten on October 1 to advocate for better care. Her parents, Bram and Emine Verbrugge, founded the Stichting Voor Sara to fund research after facing a bleak prognosis that suggested most children would die young. The foundation has since helped establish an international network of scientists working on the disease. While Sara is currently stable and happy, her father emphasizes that time is pressing to prevent future muscle loss, noting that the primary goal is halting progression rather than immediate cure.
Ozetta summarises; the reporting is the newsroom's