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Living with Perineurioma

A usually benign (non-cancerous) growth in the soft tissues, not connected to a nerve.

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Understanding Perineurioma

Perineurioma is a tumor that is usually benign, which arises from soft tissues and is not associated with a nerve.

GARD describes this as a usually benign (not cancer) tumor. It arises in soft tissues. GARD doesn't have more detail on this condition yet.

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.
Connect with expert centers
Sarcoma Foundation of America 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: Sarcoma Foundation of America
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 Sarcoma Foundation of America
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

Is my tumor benign, and how do we know?

Does it need treatment or just monitoring?

How often should follow-up scans be done?

Quick facts

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

Neurological

Patient organizations

Sarcoma Foundation of AmericaPerineurioma · United States

Source: NIH GARD · PerineuriomaGARD ID 12698 · 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 Perineurioma.

Explore the Perineurioma blog

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Explore research for Perineurioma

Explore actively recruiting Perineurioma studies with HealthSpark.

HealthSpark

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

Recruiting studies from ClinicalTrials.gov
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Eligibility is confirmed by the study team

I can help you find recruiting Perineurioma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.

Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

HealthStoryfor Perineurioma

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HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Perineurioma experiences more deeply and prepare for better conversations with your doctors and care team.

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