Living with Diffuse intrinsic pontine glioma
A tumor of the brainstem that usually affects children.
Understanding Diffuse intrinsic pontine glioma
It usually affects children. GARD lists onset any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Alex's Lemonade Stand Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: dipg; dipg - diffuse intrinsic pontine glioma
Patient organizations
- Alex's Lemonade Stand FoundationDiffuse intrinsic pontine glioma · United States
- Pediatric Brain Tumor FoundationDiffuse intrinsic pontine glioma · United States
- The Childhood Brain Tumor FoundationDiffuse intrinsic pontine glioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Diffuse intrinsic pontine glioma.
Explore research for Diffuse intrinsic pontine glioma
Explore actively recruiting Diffuse intrinsic pontine glioma studies with HealthSpark.
Find actively recruiting studies for Diffuse intrinsic pontine glioma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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