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:
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsUniversity of Miami — NA
Landspitali University Hospital — NA
Saglik Bilimleri Universitesi — PHASE4
Universität Münster — NA
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 →Clinical Trials
View all trials with filters →No actively recruiting trials found for Frontal fibrosing alopecia at this time.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Frontal fibrosing alopecia.
Community
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Start the conversation →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
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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.