Bringing the glioblastoma patient voice to the World Orphan Drug Congress

Glioblastoma.care attended the World Orphan Drug Congress in Amsterdam, represented by Jasiek Tabeau, Dirk Jan van Drooge and Juan Planellas.

During the session “Rethinking the Path for Orphan Drugs in the Netherlands,” Jasiek shared his experience of seeking glioblastoma treatments beyond standard care. He highlighted the work patients face in researching options, arranging treatment abroad and finding the money to pay for it.

Optune/TTFields was a central example: a treatment with randomised phase III evidence of improved survival and reimbursed access in several European countries, yet still outside routine reimbursed care in the Netherlands.

Thank you to the organisers, fellow speakers and everyone who exchanged ideas with us. We look forward to building on these connections to improve access for glioblastoma patients.