Diagnosed with DIPG or DMG?
Welcome to the DIPG/DMG Toolbox
- A free resource sponsored by parents/patients like you
A diagnosis of DIPG or DMG can feel overwhelming, and it’s not always clear what to do next. While every journey is different, there are ways to find direction and explore treatment options early on.
You don’t have to go through this alone. This toolbox is here to help you build your support system, understand your options, and take the next steps.
Join the DIPG or DMG Warrior Program
By joining the DIPG or DMG Warrior Program, your family becomes part of a connected community of families who understand this road and are in it with you.
Each family is personally connected with a Family Support Coordinator who is also a DIPG/DMG parent. Someone who has lived this and can support you, share resources, and be there through each stage of the journey.
Whether you are newly diagnosed, in treatment, or navigating what comes next, the Warrior Program offers connection, guidance, and a network of families who truly understand what this diagnosis means.
If you're feeling overwhelmed or unsure where to start, this is a place to find support, ask questions, and know you are not facing this alone.
Join the DIPG/DMG Registry
The registry was created through the efforts of families and researchers working together, with a shared determination to better understand this disease and accelerate progress for every patient diagnosed.
Families can choose to enroll in the DIPG/DMG Registry at any point in their journey, though many find it helpful to do so early.
By participating, every patient’s medical information contributes to a global research effort focused on advancing understanding, identifying patterns, and moving toward more effective treatments. Each family who takes part helps researchers learn faster and strengthens the collective effort to improve outcomes for all individuals facing DIPG and DMG.
Families who participate may also request a free records review of medical records and imaging. This review, conducted by specialists experienced in DIPG and DMG, can provide additional insight and, in some cases, help confirm a diagnosis—often within a few days.
Families are enrolled in the appropriate registry based on their location, with international efforts working together and sharing data collaboratively.
Please note: At this time, reviews are only guaranteed for families in the United States, Canada, and Australia.
Learn About Clinical Trials
DIPG and DMG are complex diagnoses, and treatment options continue to evolve. Clinical trials may be one option to consider as you explore what comes next.
We’ve provided a pre-filtered search through www.clinicaltrials.gov to help you find trials that are currently recruiting or active for DIPG and DMG
Having access to this information puts more knowledge in your hands—helping you stay informed, identify potential opportunities early, and take an active role in conversations with your care team.
If you would like to run your own search on ClinicalTrials.gov, the U.S. National Library of Medicine offers short video tutorials that walk through how to use the site step-by-step here: https://www.nlm.nih.gov/oet/ed/ct/demo_videos.html
Get Informed and Get Educated
You’re already in the right place. DIPG.org offers a wide range of educational resources, including videos, physician-authored content, updates on ongoing research, and links to additional resources within the community. These resources are designed to help you better understand DIPG and DMG and stay informed as new information becomes available.
Looking for something more? Join the DIPG/DMG Support Group for Families on Facebook. This group is a safe space to connect with other parents, ask your own questions, get updates, and find answers.
If you have further questions or needs that were not offered above, please reach out and we are more than happy to help. As we always say, family never fights alone.
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