Overview
Craniopharyngioma is a rare, slow-growing brain tumor that forms near the pituitary gland and hypothalamus — two very important areas at the base of the brain that control hormones, growth, and many body functions. Even though craniopharyngiomas are not cancerous (they are classified as benign or low-grade tumors), they can cause serious problems because of where they grow. As the tumor expands, it can press on nearby structures including the optic nerves (which carry vision signals), the pituitary gland, and the hypothalamus. The most common symptoms include headaches, vision problems, and signs of hormone imbalances such as slow growth in children, fatigue, weight gain, and problems with thirst and urination. Many people are diagnosed after noticing changes in their vision or after a child stops growing normally. The tumor can also cause increased pressure inside the skull, which leads to nausea and vomiting. Treatment usually involves surgery to remove as much of the tumor as safely possible, often followed by radiation therapy. Because the tumor sits near such delicate brain structures, complete removal is not always possible without causing harm. Hormone replacement therapy is almost always needed after treatment because the pituitary gland is often damaged. Long-term follow-up with a team of specialists is essential, as the tumor can come back and the effects on hormones and quality of life can be lifelong.
Key symptoms:
Persistent or worsening headachesBlurred or double visionLoss of peripheral (side) visionNausea and vomitingUnusual thirst and frequent urination (diabetes insipidus)Unexplained weight gainExtreme tiredness and low energySlow or stopped growth in childrenDelayed puberty or loss of menstrual periodsMemory problems or difficulty concentratingMood changes or depressionSensitivity to cold temperaturesLow blood pressure or dizziness
Clinical phenotype terms (46)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
9 eventsAssistance Publique - Hôpitaux de Paris
Deling Li — NA
Eva Marie Erfurth, MD, PhD — PHASE2
Sabine Mueller, MD, PhD — PHASE2
University of Colorado, Denver
Alliance for Clinical Trials in Oncology — PHASE2
St. Jude Children's Research Hospital — PHASE2
St. Jude Children's Research Hospital — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Craniopharyngioma.
8 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Craniopharyngioma.
Community
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Start the conversation →Latest news about Craniopharyngioma
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What subtype of craniopharyngioma do I have, and does that affect my treatment options?,What is the goal of surgery — complete removal or partial removal — and what are the risks to my vision and hormone function?,Will I need radiation therapy, and if so, what type is best for my situation?,Which hormones will I need to replace, and how will we monitor whether the doses are right?,What is the chance the tumor will come back, and how often will I need MRI scans?,Are there any clinical trials or targeted therapies I should consider?,What support is available for managing weight, mood, memory, and school or work challenges?
Common questions about Craniopharyngioma
What is Craniopharyngioma?
Craniopharyngioma is a rare, slow-growing brain tumor that forms near the pituitary gland and hypothalamus — two very important areas at the base of the brain that control hormones, growth, and many body functions. Even though craniopharyngiomas are not cancerous (they are classified as benign or low-grade tumors), they can cause serious problems because of where they grow. As the tumor expands, it can press on nearby structures including the optic nerves (which carry vision signals), the pituitary gland, and the hypothalamus. The most common symptoms include headaches, vision problems, and s
How is Craniopharyngioma inherited?
Craniopharyngioma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Craniopharyngioma?
Yes — 8 recruiting clinical trials are currently listed for Craniopharyngioma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Craniopharyngioma?
25 specialists and care centers treating Craniopharyngioma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.