DIPG? Suggested Best Practices Guide

DIPGdiagnosis_edited-1

A diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG) is shocking to any parent. First you must know that time is of the essence.  DIPG has a poor prognosis and will require quick action.

An outline of suggested best practices has been prepared for use by parents. Dr. Sabine Mueller is a pediatric neuro-oncologist who specializes in caring for children with brain tumors and related genetic syndromes. Before completing medical school, she worked as a scientist, director of genomics and project leader for a brain tumor program at AGY Therapeutics, a biotechnology company in South San Francisco.

In her research, Mueller studies treatments for children with brain tumors, looking especially at improving long-term cognitive outcomes. In September 2021, Dr. Sabine Mueller’s gave a presentation on Best Practices at the Tough2gether Against DIPG/DMG Breakfast at CureFest 2021 in Washington, DC. It may be viewed HERE.

Print the Best Practices guide below and discuss with your neuro-oncolgist. Print PDF Here

DIPG Best Practices Upon Diagnosis

DIPGNavigator_edited-1You are not alone. 

You can talk to someone who understands. 

The My DIPG Navigator can:


RadiationClick_edited-1Please note: Dr. Mueller mentions that radiation is the most important first step and needs to be started relatively quickly to preserve as much function as possible during the “honeymoon period.”  To become  more familar with the radiation process and what it may involve, please click here>