A neuroglial tumor that arises from the middle portion of the brain stem. It usually affects children and has a poor prognosis.
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for diffuse intrinsic pontine glioma is limited due to its rarity and the complexity of the condition, which affects fewer than 500 children per year in the U.S. This low prevalence leads to challenges in conducting systematic clinical studies. Additionally, the lack of identified genetic markers and established inheritance patterns further complicates research efforts and clinical understanding.
To navigate your care effectively, seek a pediatric neurologist or a neuro-oncologist with expertise in brain tumors, particularly those specializing in DIPG. While there are currently no specific patient organizations identified for DIPG, you can explore resources like the National Organization for Rare Disorders (NORD) at rarediseases.org for support and information. Additionally, inquire about participation in clinical trials, as they may provide access to cutting-edge therapies and contribute to valuable research.
There are currently two orphan drugs designated for the treatment of DIPG: 5,6-dianhydrogalactitol and dimethylaminomicheliolide Fumarate. Additionally, there are 54 active clinical trials exploring various treatment options for this condition. You can find more information about these trials at ClinicalTrials.gov by searching for 'diffuse intrinsic pontine glioma'. This ongoing research offers hope for improved treatment strategies in the future.
Actionable guidance for navigating care for diffuse intrinsic pontine glioma
To navigate your care effectively, seek a pediatric neurologist or a neuro-oncologist with expertise in brain tumors, particularly those specializing in DIPG. While there are currently no specific patient organizations identified for DIPG, you can explore resources like the National Organization for Rare Disorders (NORD) at rarediseases.org for support and information. Additionally, inquire about participation in clinical trials, as they may provide access to cutting-edge therapies and contribute to valuable research.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for diffuse intrinsic pontine glioma is limited due to its rarity and the complexity of the condition, which affects fewer than 500 children per year in the U.S. This low prevalence leads to challenges in conducting systematic clinical studies. Additionally, the lack of identified genetic markers and established inheritance patterns further complicates research efforts and clinical understanding.
To navigate your care effectively, seek a pediatric neurologist or a neuro-oncologist with expertise in brain tumors, particularly those specializing in DIPG. While there are currently no specific patient organizations identified for DIPG, you can explore resources like the National Organization for Rare Disorders (NORD) at rarediseases.org for support and information. Additionally, inquire about participation in clinical trials, as they may provide access to cutting-edge therapies and contribute to valuable research.
There are currently two orphan drugs designated for the treatment of DIPG: 5,6-dianhydrogalactitol and dimethylaminomicheliolide Fumarate. Additionally, there are 54 active clinical trials exploring various treatment options for this condition. You can find more information about these trials at ClinicalTrials.gov by searching for 'diffuse intrinsic pontine glioma'. This ongoing research offers hope for improved treatment strategies in the future.
Actionable guidance for navigating care for diffuse intrinsic pontine glioma
To navigate your care effectively, seek a pediatric neurologist or a neuro-oncologist with expertise in brain tumors, particularly those specializing in DIPG. While there are currently no specific patient organizations identified for DIPG, you can explore resources like the National Organization for Rare Disorders (NORD) at rarediseases.org for support and information. Additionally, inquire about participation in clinical trials, as they may provide access to cutting-edge therapies and contribute to valuable research.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for diffuse intrinsic pontine glioma is limited due to its rarity and the complexity of the condition, which affects fewer than 500 children per year in the U.S. This low prevalence leads to challenges in conducting systematic clinical studies. Additionally, the lack of identified genetic markers and established inheritance patterns further complicates research efforts and clinical understanding.
To navigate your care effectively, seek a pediatric neurologist or a neuro-oncologist with expertise in brain tumors, particularly those specializing in DIPG. While there are currently no specific patient organizations identified for DIPG, you can explore resources like the National Organization for Rare Disorders (NORD) at rarediseases.org for support and information. Additionally, inquire about participation in clinical trials, as they may provide access to cutting-edge therapies and contribute to valuable research.
There are currently two orphan drugs designated for the treatment of DIPG: 5,6-dianhydrogalactitol and dimethylaminomicheliolide Fumarate. Additionally, there are 54 active clinical trials exploring various treatment options for this condition. You can find more information about these trials at ClinicalTrials.gov by searching for 'diffuse intrinsic pontine glioma'. This ongoing research offers hope for improved treatment strategies in the future.
Actionable guidance for navigating care for diffuse intrinsic pontine glioma
To navigate your care effectively, seek a pediatric neurologist or a neuro-oncologist with expertise in brain tumors, particularly those specializing in DIPG. While there are currently no specific patient organizations identified for DIPG, you can explore resources like the National Organization for Rare Disorders (NORD) at rarediseases.org for support and information. Additionally, inquire about participation in clinical trials, as they may provide access to cutting-edge therapies and contribute to valuable research.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.