Frontal fibrosing alopecia

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28Specialists8Treatment centers

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Overview

Frontal fibrosing alopecia (FFA) is a form of scarring (cicatricial) alopecia that primarily affects the frontal and temporal hairline, causing progressive and permanent hair loss in a band-like pattern along the front and sides of the scalp. It is considered a clinical variant of lichen planopilaris (LPP), a condition in which chronic inflammation destroys hair follicles and replaces them with scar tissue. FFA predominantly affects postmenopausal women, though it can also occur in premenopausal women and, rarely, in men. The condition was first described in 1994 and appears to be increasing in prevalence, though the reasons for this are not fully understood. Key clinical features include recession of the frontotemporal hairline, loss of eyebrows (often preceding scalp hair loss), and loss of body hair in many cases. The skin in affected areas may appear pale or slightly scarred. Some patients also develop facial papules, particularly on the forehead and temples, which represent involvement of vellus hair follicles. Lichen planus pigmentosus, a hyperpigmentation of the face and neck, may co-occur. The disease can also affect the occipital hairline and sideburn areas. Patients may experience mild itching, burning, or tenderness at the hairline, though many are asymptomatic aside from the cosmetic changes. The exact cause of FFA remains unclear, but it is thought to involve an autoimmune-mediated inflammatory process targeting the hair follicle. Genetic susceptibility factors have been identified, and environmental triggers such as sunscreen use and certain cosmetic products have been investigated, though definitive causation has not been established. Treatment aims to slow or halt disease progression, as lost hair cannot regrow once scarring has occurred. Commonly used therapies include 5-alpha reductase inhibitors (such as finasteride or dutasteride), hydroxychloroquine, topical or intralesional corticosteroids, and topical calcineurin inhibitors such as tacrolimus. No single treatment has been proven universally effective, and management is individualized based on disease activity and patient response.

Also known as:

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

4 events
Feb 2026Facial Papules in Frontal Fibrosing Alopecia (FFA)

University of Miami — NA

TrialNOT YET RECRUITING
Dec 2025Omega-Cold Supplementation With Free Fatty Acids for the Prevention of Respiratory Infections in Adults.

Landspitali University Hospital — NA

TrialNOT YET RECRUITING
Feb 2024Contrast Nephropathy Associated FFA

Saglik Bilimleri Universitesi — PHASE4

TrialACTIVE NOT RECRUITING
Oct 2023Effects of a Combined Supplementation of Conjugated Linoleic Acid (CLA) and Probiotics (Vivomixx®) as add-on to a First-line Immunotherapy in Relapsing-remitting Multiple Sclerosis

Universität Münster — NA

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Frontal fibrosing alopecia.

View clinical trials →

No actively recruiting trials found for Frontal fibrosing alopecia at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Frontal fibrosing alopecia community →

Specialists

Showing 25 of 28View all specialists →
DP
DirkJan Hijnen, MD, PhD
Specialist
PI on 2 active trials
TL
Translational Medical Leader
Specialist
PI on 1 active trial
BM
Boni Elewski, MD
BIRMINGHAM, AL
Specialist
PI on 1 active trial
MF
María Antonia Fernández-Pugnaire
Specialist
2 Frontal fibrosing alopecia publications
MP
María Librada Porriño-Bustamante
Specialist
2 Frontal fibrosing alopecia publications
DS
David Saceda-Corralo
Specialist
2 Frontal fibrosing alopecia publications
MH
Matthew Harries
Specialist
2 Frontal fibrosing alopecia publications
RE
Raymond Z Ezzat
Specialist
2 Frontal fibrosing alopecia publications
SA
Sarah Alenezi
Specialist
2 Frontal fibrosing alopecia publications
MM
Mariya Miteva
MIAMI, FL
Specialist
2 Frontal fibrosing alopecia publications
AM
Amy McMichael
COVINA, CA
Specialist
2 Frontal fibrosing alopecia publications
AV
Annika Vogt
Specialist
2 Frontal fibrosing alopecia publications
FQ
Federico Quadrelli
Specialist
2 Frontal fibrosing alopecia publications
SA
Salvador Arias-Santiago
Specialist
2 Frontal fibrosing alopecia publications
MM
Maria K Hordinsky, MD
MINNEAPOLIS, MN
Specialist
PI on 3 active trials
EP
Emma Guttman-Yassky, MD, PhD
Specialist
PI on 4 active trials
CM
Chinmanat Lekhavat, MD
Specialist
PI on 3 active trials
BP
Brett King, MD, PhD
Specialist
PI on 4 active trials
BM
Brian Drolet, MD
NASHVILLE, TN
Specialist
PI on 1 active trial
NV
Neusa Yuriko Sakai Valente
Specialist
1 Frontal fibrosing alopecia publication
CF
Carolina Oliveira Costa Fechine
Specialist
1 Frontal fibrosing alopecia publication
SC
Stephano Cedirian
Specialist
2 Frontal fibrosing alopecia publications
LA
Leila Asfour
SAN RAFAEL, CA
Specialist
2 Frontal fibrosing alopecia publications
GM
Gary F Lewis, MD
Specialist
PI on 3 active trials1 Frontal fibrosing alopecia publication
MM
Michael Roden, Prof., MD
PICKERINGTON, OH
Specialist
PI on 5 active trials

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Frontal fibrosing alopecia.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Frontal fibrosing alopecia

Disease timeline:

New recruiting trial: Effects of a Combined Supplementation of Conjugated Linoleic Acid (CLA) and Probiotics (Vivomixx®) as add-on to a First-line Immunotherapy in Relapsing-remitting Multiple Sclerosis

A new clinical trial is recruiting patients for Frontal fibrosing alopecia

Caregiver Resources

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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 Frontal fibrosing alopecia

What is Frontal fibrosing alopecia?

Frontal fibrosing alopecia (FFA) is a form of scarring (cicatricial) alopecia that primarily affects the frontal and temporal hairline, causing progressive and permanent hair loss in a band-like pattern along the front and sides of the scalp. It is considered a clinical variant of lichen planopilaris (LPP), a condition in which chronic inflammation destroys hair follicles and replaces them with scar tissue. FFA predominantly affects postmenopausal women, though it can also occur in premenopausal women and, rarely, in men. The condition was first described in 1994 and appears to be increasing i

How is Frontal fibrosing alopecia inherited?

Frontal fibrosing alopecia follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Frontal fibrosing alopecia typically begin?

Typical onset of Frontal fibrosing alopecia is adult. Age of onset can vary across affected individuals.

Which specialists treat Frontal fibrosing alopecia?

25 specialists and care centers treating Frontal fibrosing alopecia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.