Bringing the GBM patient perspective to the World Orphan Drug Congress in Amsterdam

Next week, I’ll be speaking at the World Orphan Drug Congress in Amsterdam, the Netherlands.

Since my diagnosis, I’ve experienced how difficult it can be to access treatments for glioblastoma. Finding options abroad, arranging care and raising money takes time and energy that patients and their families can barely spare.

On Monday afternoon, I’ll share my experiences in pursuing international treatments during the workshop “From EU Approval to Patient Availability: Rethinking the Path for Orphan Drugs in The Netherlands.”

Together with other patient representatives, we’ll discuss what needs to change to improve access to treatments and funding.

Through such contributions I want to help other patients find their way and work towards a system that supports them. Because when you’re living with a brain tumor, time is precious.

Jasiek Tabeau