Juvenile nasopharyngeal angiofibroma

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:289596D10.6
Who is this for?
Show terms as
1Active trials8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

What is Juvenile nasopharyngeal angiofibroma?

Juvenile nasopharyngeal angiofibroma (JNA), also called juvenile nasal angiofibroma or simply nasopharyngeal angiofibroma, is a rare, non-cancerous (benign) tumor that grows in the back of the nasal cavity where the nose meets the throat (an area called the nasopharynx). Despite being benign, this tumor can be locally aggressive, meaning it tends to grow into surrounding structures like the sinuses, eye sockets, and even the base of the skull. It occurs almost exclusively in adolescent males, typically between the ages of 10 and 25. The most common symptoms include one-sided nasal blockage (stuffiness) and repeated nosebleeds that can sometimes be severe. As the tumor grows, it may cause facial swelling, headaches, difficulty breathing through the nose, reduced sense of smell, and changes in vision if it presses on nearby structures. Some patients may also experience hearing changes if the tumor blocks the opening of the ear canal in the throat. The primary treatment for JNA is surgical removal. Before surgery, doctors often perform a procedure called embolization, which reduces blood flow to the tumor to minimize bleeding during the operation. Advances in endoscopic surgery (using a camera through the nose) have greatly improved outcomes, allowing many tumors to be removed without external incisions. Radiation therapy may be considered for tumors that cannot be fully removed surgically or that recur. Hormonal therapy has been explored but is not standard. With appropriate treatment, the outlook is generally good, though recurrence can happen in some cases and requires ongoing monitoring.

Also known as:

Key symptoms:

One-sided nasal blockage or stuffinessRepeated or severe nosebleedsFacial swelling, especially on one sideHeadachesDifficulty breathing through the noseReduced or lost sense of smellNasal voice or changes in speechBulging of the eye or double visionHearing loss or ear fullness on one sideCheek swelling or deformityWatery eyes or tearingPain or pressure in the faceSnoring or mouth breathing

Clinical phenotype terms (8)— hover any for plain English
  • Juvenile nasopharyngeal angiofibromaHP:0030429
  • Nasal congestionHP:0001742
  • Juvenile colonic polyposisHP:0012198
Inheritance
Sporadic
Usually appears on its own, not inherited from a parent
Age of Onset
Juvenile
Begins in the teen years
Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
May 2022Efficacy and Safety of Sirolimus in Children and Adolescents With Juvenile Nasopharyngeal Angiofibroma (JNA)

Federal Research Institute of Pediatric Hematology, Oncology and Immunology — PHASE3

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

No FDA-approved treatments are currently listed for Juvenile nasopharyngeal angiofibroma.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

Phase 31 trial
Efficacy and Safety of Sirolimus in Children and Adolescents With Juvenile Nasopharyngeal Angiofibroma (JNA)
Phase 3
Actively Recruiting
· Sites: Moscow · Age: 7–18 yrs

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

No specialists are currently listed for Juvenile nasopharyngeal angiofibroma.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to Juvenile nasopharyngeal angiofibroma.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Juvenile nasopharyngeal angiofibromaForum →

No community posts yet. Be the first to share your experience with Juvenile nasopharyngeal angiofibroma.

Start the conversation →

Latest news about Juvenile nasopharyngeal angiofibroma

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

Disease timeline:

New recruiting trial: Efficacy and Safety of Sirolimus in Children and Adolescents With Juvenile Nasopharyngeal Angiofibroma (JNA)

A new clinical trial is recruiting patients for Juvenile nasopharyngeal angiofibroma

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 stage is the tumor, and how far has it spread into surrounding structures?,Is endoscopic surgery an option, or will a more extensive open surgery be needed?,Will embolization be performed before surgery, and what are the risks?,What is the chance of the tumor coming back after surgery, and how will we monitor for recurrence?,Are there any risks to vision, hearing, or facial growth from the surgery?,How long will recovery take, and when can normal activities like school and sports resume?,If the tumor recurs, what are the next treatment options, including radiation therapy?

Common questions about Juvenile nasopharyngeal angiofibroma

What is Juvenile nasopharyngeal angiofibroma?

Juvenile nasopharyngeal angiofibroma (JNA), also called juvenile nasal angiofibroma or simply nasopharyngeal angiofibroma, is a rare, non-cancerous (benign) tumor that grows in the back of the nasal cavity where the nose meets the throat (an area called the nasopharynx). Despite being benign, this tumor can be locally aggressive, meaning it tends to grow into surrounding structures like the sinuses, eye sockets, and even the base of the skull. It occurs almost exclusively in adolescent males, typically between the ages of 10 and 25. The most common symptoms include one-sided nasal blockage (s

How is Juvenile nasopharyngeal angiofibroma inherited?

Juvenile nasopharyngeal angiofibroma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Juvenile nasopharyngeal angiofibroma typically begin?

Typical onset of Juvenile nasopharyngeal angiofibroma is juvenile. Age of onset can vary across affected individuals.

Are there clinical trials for Juvenile nasopharyngeal angiofibroma?

Yes — 1 recruiting clinical trial is currently listed for Juvenile nasopharyngeal angiofibroma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Frequently asked questions about Juvenile nasopharyngeal angiofibroma

Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.

  1. What is Juvenile nasopharyngeal angiofibroma?

    Juvenile nasopharyngeal angiofibroma is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:289596). It is typically inherited as sporadic. Age of onset is generally juvenile. For verified primary sources, see the UniteRare Juvenile nasopharyngeal angiofibroma page.

  2. How is Juvenile nasopharyngeal angiofibroma inherited?

    Juvenile nasopharyngeal angiofibroma follows sporadic inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.

  3. Are there FDA-approved treatments for Juvenile nasopharyngeal angiofibroma?

    Approved treatments for Juvenile nasopharyngeal angiofibroma are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.

  4. Are there clinical trials recruiting for Juvenile nasopharyngeal angiofibroma?

    UniteRare currently lists 1 clinical trial relevant to Juvenile nasopharyngeal angiofibroma sourced from ClinicalTrials.gov. Each trial entry includes recruitment status, eligibility criteria summary, principal-investigator information, and study locations. Patients should discuss eligibility with their healthcare provider before enrolling.

  5. How do I find a specialist for Juvenile nasopharyngeal angiofibroma?

    Verified Juvenile nasopharyngeal angiofibroma specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.

See full Juvenile nasopharyngeal angiofibroma page for complete clinical details, sources, and verified-specialist listings.

Cite this page

Select a citation format above to view and copy.