Domestic
Parents of 11-year-old Sara told no help was available, now their daughter will meet Rob Jetten: 'Look where we stand now'
Ten years after receiving a diagnosis for her rare muscle disease with little medical support, Bram Verbrugge and Emine founded the Stichting Voor Sara to fund research. Their daughter Sara, who has LAMA2-RD, is scheduled to meet Prime Minister Rob Jetten on October 1 to advocate for better care. The foundation has helped establish an international network of researchers, shifting from a time of scarce information to active collaboration aimed at preventing disease progression.
Ozetta summarises; the reporting is the newsroom's