10/08/2025
Thank you the the whole global community for all the research, patient tirals and the dedication it takes to make this step forward a reality. Special thanks to our local DIPG center at Zurich's Children's hopsital Kinderspital Zürich. All patients (US, but see below) should have an easier access to (dordaviprone) now named by Jazz Pharmaceuticals.
Modeyso (dordaviprone) is FDA-approved (US only) only for -mutant DMG after progression, but ❗ US doctors can legally prescribe it off-label before progression. This has been done after initial radiation, in combination trials, as maintenance for minimal disease, or as a bridge to other studies, with early data showing good tolerability.
👇 International patients can access it if a US doctor prescribes it; a parent can bring the medicine home for their child if kept in original packaging with a prescription and doctor’s letter. Most countries allow a personal supply (often up to 90 days) but rules vary, and some require advance clearance.
Price infromation is not released yet, dosing and all details about the drug from the FDA site is in the comments.
https://oncodaily.com/blog/matt-dun-344245
RUN DIPG DIPG Research ChadTough Defeat DIPG Foundation Levi's Legacy DIPG Foundation
Matt Dun: The First Therapeutic Step Forward for H3K27-Altered Diffuse Midline Glioma / cancer, Dun Lab, Jazz Pharmaceuticals, Matt Dun, midline glioma,
