Living with Neurofibroma
A non-cancerous tumor that grows from the cells and tissues that cover nerves.
Understanding Neurofibroma
Some people who develop neurofibromas have a genetic condition called neurofibromatosis (NF). There are different types of NF, and type 1 is the most common. GARD lists onset in adulthood.
Signs & symptoms
GARD lists these types of features:
- Neurofibroma
- Enlarged nerves
- Lumps under the skin
- Plexiform neurofibroma
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.
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
Quick facts
GARD doesn't describe a cause for this condition. Some people with neurofibromas have a genetic condition known as neurofibromatosis.
Also known as: benign neurofibroma; multiple neurofibromas; neurofibroma (who grade i); neurofibroma, benign; neurofibromata
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
You are more than your diagnosis
Perspectives from people navigating life with Neurofibroma.
Explore research for Neurofibroma
Explore actively recruiting Neurofibroma studies with HealthSpark.
Find actively recruiting studies for Neurofibroma 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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