Frontal fibrosing alopecia
Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.
Age of Onset
Autosomal dominant ?A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease
Autosomal recessive ?Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype
X-linked dominant ?X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
X-linked recessive ?Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder
Mitochondrial or multigenic ?Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.
Multigenic or multifactor ?Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.
Other Names (AKA)
Frontal fibrosing alopecia (FFA) is a form of lichen planopilaris that is characterized primarily by slowly progressive hair loss (alopecia) and scarring on the scalp near the forehead. In some cases, the eyebrows, eye lashes and/or other parts of the body may be involved, as well. Although it has been suggested that FFA may be due to hormonal changes or an autoimmune response, the exact cause of this condition is not yet known. There is currently no cure for FFA; however, treatment with certain types of medications may stop or slow hair loss in some cases.
Approximately half of all affected people experience loss of eyebrows, as well. Less commonly, the eyelashes may also be involved. Some people with FFA develop hair loss in areas other than the scalp and face.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Cicatricial Alopecia Research Foundation (C.A.R.F.)
1586 Sumneytown Pike
PO Box 1322
Kulpsville, PA 19443
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
- The Cicatricial Alopecia Research Foundation has an information page on Frontal fibrosing alopecia. Click on the link to view this information page.
- DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition.
- Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
- The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
- Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Frontal fibrosing alopecia. Click on the link to view a sample search on this topic.
- Tziotzios C, Petridis C, Dand N, et al. Genome-wide association study in frontal fibrosing alopecia identifies four susceptibility loci including HLA-B*07:02. Nature Communications. 2019 Mar 8;10(1):1150.
- Arnold S. & Cooper S. Frontal fibrosing alopecia. Orphanet. May 2011; https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=254492.
- Singh D, Oakley A. Frontal fibrosing alopecia. DermNet NZ. January 2015; https://dermnetnz.org/hair-nails-sweat/frontal-fibrosing-alopecia.html.
- Basil M Hantash, MD. Scarring Alopecia. Medscape. February 26, 2016; https://emedicine.medscape.com/article/1073559-overview.
- Shapiro J & Otberg N. Lichen planopilaris. UpToDate. 2016; https://www.uptodate.com/contents/lichen-planopilaris.
- Tziotzios C, Stefanato CM, Fenton DA, Simpson MA, McGrath JA. Frontal fibrosing alopecia: reflections and hypotheses on aetiology and pathogenesis. Exp Dermatol. 2016 Nov; 25(11):847-852. https://www.ncbi.nlm.nih.gov/pubmed/27198858.
- Navarro-Belmonte MR, Navarro-López V, Ramírez-Boscà A, Martínez-Andrés MA, Molina-Gil C, González-Nebreda M, Asín-Llorca M. Case series of familial frontal fibrosing alopecia and a review of the literature. J Cosmet Dermatol. 2015 Mar; 14(1):64-9. https://www.ncbi.nlm.nih.gov/pubmed/25614294.
- Frequently Asked Questions. Cicatricial Alopecia Research Foundation. December 15, 2015; https://www.carfintl.org/faq.php.
- Tan KT, Messenger AG. Frontal fibrosing alopecia: clinical presentations and prognosis. British Journal of Dermatology. 2009; 160:75-79. https://www.ncbi.nlm.nih.gov/pubmed/18811690.