Overview
Nasal ganglioglioma is an extremely rare congenital benign tumor arising within the nasal cavity. It is classified among developmental malformations of the nose and is composed of both neuronal (ganglion cell) and glial cell elements, distinguishing it from simple nasal gliomas which contain only glial tissue. The condition is typically present at birth or identified in early infancy and is thought to result from ectopic central nervous system tissue that becomes sequestered in the nasal region during embryological development. It is classified under congenital malformations of the nose (ICD-10: Q30.8). Clinically, nasal ganglioglioma presents as a mass within the nasal cavity that may cause nasal obstruction, difficulty breathing through the nose, and occasionally feeding difficulties in neonates. The mass is typically firm, non-compressible, and does not transilluminate. Unlike encephaloceles, nasal gangliogliomas generally do not have an intracranial connection, though imaging studies (MRI or CT) are essential to rule out any communication with the central nervous system before intervention. Treatment is primarily surgical excision of the mass. Complete surgical removal is generally curative, and the prognosis is excellent, as these tumors are benign and rarely recur after complete resection. Multidisciplinary evaluation involving otolaryngology, neurosurgery, and radiology is recommended to plan the surgical approach and ensure there is no intracranial extension. Long-term follow-up may be advised to monitor for any recurrence.
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
1 eventChildren's Oncology Group — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Nasal ganglioglioma.
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View all trials with filters →No actively recruiting trials found for Nasal ganglioglioma at this time.
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Rare Disease Specialist
Treatment Centers
8 centersChildren's Hospital Colorado
📍 Aurora, Colorado
👤 Zachary Grinspan, MD
Arkansas Children's Hospital
📍 Little Rock, Arkansas
Children's Hospital of Orange County
📍 Orange, California
👤 Richard Neibeger, MD
Children's National Medical Center
📍 Washington D.C., District of Columbia
👤 Richard Neibeger, MD
UCSF Benioff Children's Hospital Oakland
📍 Oakland, California
👤 Neeta Thakur, MD, MPH
Connecticut Children's Medical Center
📍 Hartford, Connecticut
University of Miami Miller School of Medicine-Sylvester Cancer Center
📍 Miami, Florida
👤 Ann (Annie) W Silk
Harvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
Travel Grants
No travel grants are currently matched to Nasal ganglioglioma.
Community
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Start the conversation →Latest news about Nasal ganglioglioma
Disease timeline:
New trial: A Study of Lower Radiotherapy Dose to Treat Children With CNS Germinoma
Phase PHASE2 trial recruiting. 3-Dimensional Conformal Radiation Therapy
Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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.
Common questions about Nasal ganglioglioma
What is Nasal ganglioglioma?
Nasal ganglioglioma is an extremely rare congenital benign tumor arising within the nasal cavity. It is classified among developmental malformations of the nose and is composed of both neuronal (ganglion cell) and glial cell elements, distinguishing it from simple nasal gliomas which contain only glial tissue. The condition is typically present at birth or identified in early infancy and is thought to result from ectopic central nervous system tissue that becomes sequestered in the nasal region during embryological development. It is classified under congenital malformations of the nose (ICD-1
How is Nasal ganglioglioma inherited?
Nasal ganglioglioma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Nasal ganglioglioma typically begin?
Typical onset of Nasal ganglioglioma is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Nasal ganglioglioma?
1 specialists and care centers treating Nasal ganglioglioma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.