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Living with Intraneural perineurioma

A slow-growing, low-grade nerve sheath tumor that forms inside a nerve.

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Understanding Intraneural perineurioma

Intraneural perineurioma is a WHO grade I tumor that arises within the endoneurium, the tissue around nerve fibers.

It is marked by the formation of pseudo-onion bulbs by growing perineural cells. It can appear from childhood to adulthood.

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

Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.

Care & treatment

Care team: Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
Expert care: Ask about multidisciplinary care centers for rare conditions
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 rare disease patient organizations for support
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

Bring these questions to your next doctor visit

Which nerve is affected, and does it affect my movement or feeling?

How will the tumor be monitored?

Which specialist should manage my care?

Quick facts

Symptoms usually startfrom Childhood to Adulthood

GARD doesn't describe a cause for this condition yet.

Neurological

Also known as: intraneural perineurioma (who grade i)

Patient organizations

Rare-disease groups that can help

Global GenesRare Diseases · United States
National Organization for Rare DisordersRare Diseases · United States
Genetic AllianceRare Diseases · United States
RARE FoundationRare Diseases · United States

Source: NIH GARD · Intraneural perineuriomaGARD ID 10921 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Intraneural perineurioma.

Explore the Intraneural perineurioma blog

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Explore research for Intraneural perineurioma

Explore actively recruiting Intraneural perineurioma studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Intraneural perineurioma with HealthSpark. Share your city to explore research near you.

Recruiting studies from ClinicalTrials.gov
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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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