Alopecia universalis

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ORPHA:701OMIM:104000L63.1
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29Specialists8Treatment centers

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

Alopecia universalis (AU) is the most extensive form of alopecia areata, an autoimmune condition characterized by the complete loss of hair on the entire body. This includes the scalp, eyebrows, eyelashes, beard, axillary hair, pubic hair, and all other body hair. AU is considered the most severe end of the alopecia areata spectrum, which ranges from patchy hair loss (alopecia areata) to total scalp hair loss (alopecia totalis) to complete body hair loss (alopecia universalis). The condition results from an immune-mediated attack on hair follicles, in which T-lymphocytes target the hair bulb, disrupting the normal hair growth cycle. Importantly, the hair follicles are not permanently destroyed, meaning regrowth remains theoretically possible. Alopecia universalis primarily affects the integumentary system (skin and hair). Beyond the cosmetic impact, loss of nasal hair, eyelashes, and eyebrows can increase vulnerability to dust, allergens, and sun exposure around the eyes. Nail changes, including pitting, ridging, and brittleness, may also occur in some patients. The condition can have a profound psychological and emotional impact, affecting quality of life, self-esteem, and social functioning, particularly in children and adolescents. There is a genetic predisposition to alopecia universalis, with associations identified with several HLA genes and other immune-related loci. Treatment options have historically been limited and often unsatisfactory for this severe form. Conventional therapies include topical and systemic corticosteroids, topical immunotherapy (such as diphenylcyclopropenone), and immunosuppressive agents, though response rates in AU are generally lower than in milder forms of alopecia areata. More recently, JAK inhibitors (such as baricitinib, which received FDA approval for severe alopecia areata in 2022) have shown significant promise in promoting hair regrowth in patients with alopecia universalis, representing a major advance in the treatment landscape.

Clinical phenotype terms— hover any for plain English:

Absent eyelashesHP:0000561Patchy alopeciaHP:0002232Alopecia universalisHP:0002289Abnormal circulating lipid concentrationHP:0003119VitiligoHP:0001045Psoriasiform dermatitisHP:0003765
Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Alopecia universalis.

View clinical trials →

No actively recruiting trials found for Alopecia universalis at this time.

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

Search ClinicalTrials.gov ↗Join the Alopecia universalis community →

Specialists

Showing 25 of 29View all specialists →
MM
Maria K Hordinsky, MD
MINNEAPOLIS, MN
Specialist
PI on 3 active trials
BM
Brett King, MD
Specialist
PI on 1 active trial
CM
Chinmanat Lekhavat, MD
Specialist
PI on 3 active trials
BP
Brett King, MD, PhD
Specialist
PI on 4 active trials
SM
Supenya Varothai, MD
Specialist
PI on 1 active trial
JM
Julian Mackay-Wiggan, MD, MS
BOYNTON BEACH, FL
Specialist
PI on 6 active trials
RM
Rasthawathana Desomchoke, MD
Specialist
PI on 1 active trial
SB
Suthasinee Pattaravadee, B.Sc
Specialist
PI on 1 active trial
EP
Emma Guttman, MD, PhD
NEW YORK, NY
Specialist
PI on 2 active trials
EM
Emma Guttman, MD,PhD
NEW YORK, NY
Specialist
PI on 1 active trial
GM
Ghada A Binsaif, MD
Specialist
PI on 1 active trial1 Alopecia universalis publication
AP
Anthony E Oro, M.D., Ph.D.
STANFORD, CA
Specialist
PI on 1 active trial
TI
Tayyaba Iqbal
Specialist
1 Alopecia universalis publication
RA
Raghad Alharthi
Specialist
1 Alopecia universalis publication
ST
Syeda Shahmoona Tirmizi
NEW YORK, NY
Specialist
1 Alopecia universalis publication
MA
Mahnoor Khalil Ahmed
Specialist
1 Alopecia universalis publication
JL
Jasmine Levine
Specialist
1 Alopecia universalis publication
AA
Abdulrahman Alfawzan
Specialist
1 Alopecia universalis publication
SD
Sharon Hart, Doctorate
Specialist
PI on 1 active trial3 Alopecia universalis publications
EL
Ernest Law
Specialist
1 Alopecia universalis publication
RW
Robert Wolk
TUCSON, AZ
Specialist
1 Alopecia universalis publication
GS
Gregor Schaefer
LOS ANGELES, CA
Specialist
1 Alopecia universalis publication
VJ
Victoria Jiminez
FORT WORTH, TX
Specialist
1 Alopecia universalis publication
LA
Lama Alotaibi
Specialist
1 Alopecia universalis publication

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 Alopecia universalis.

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Community

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Caregiver Resources

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Support, advocacy, and financial assistance for caregivers of rare disease patients.

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Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Alopecia universalis

What is Alopecia universalis?

Alopecia universalis (AU) is the most extensive form of alopecia areata, an autoimmune condition characterized by the complete loss of hair on the entire body. This includes the scalp, eyebrows, eyelashes, beard, axillary hair, pubic hair, and all other body hair. AU is considered the most severe end of the alopecia areata spectrum, which ranges from patchy hair loss (alopecia areata) to total scalp hair loss (alopecia totalis) to complete body hair loss (alopecia universalis). The condition results from an immune-mediated attack on hair follicles, in which T-lymphocytes target the hair bulb,

How is Alopecia universalis inherited?

Alopecia universalis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Which specialists treat Alopecia universalis?

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