Overview
Alopecia, as referenced by Orphanet code 79364, refers to a group of rare forms of hair loss that can affect the scalp and other hair-bearing areas of the body. The term encompasses several distinct clinical entities, but in the context of rare disease classification, it typically refers to forms of alopecia that have a genetic or autoimmune basis beyond common androgenetic hair loss. Alopecia can range from patchy hair loss (alopecia areata) to complete loss of scalp hair (alopecia totalis) or total body hair loss (alopecia universalis). The condition primarily affects the integumentary system (skin and hair follicles) and can have significant psychological and social impact on affected individuals. The underlying mechanisms vary depending on the specific subtype but may involve autoimmune destruction of hair follicles, genetic mutations affecting hair follicle development or cycling, or inflammatory processes. Key symptoms include progressive or sudden hair loss on the scalp, eyebrows, eyelashes, and body hair. Some forms may be associated with nail changes such as pitting or ridging. In autoimmune forms, the hair follicles are attacked by the immune system, leading to non-scarring hair loss that may be reversible in some cases. Treatment options depend on the specific type and severity. For autoimmune-mediated alopecia, therapies include topical and intralesional corticosteroids, topical immunotherapy (such as diphenylcyclopropenone), and immunosuppressive agents. More recently, JAK inhibitors (such as baricitinib and ritlecitinib) have been approved for severe alopecia areata, representing a significant advance in treatment. For genetic forms, treatment options remain limited and largely supportive, including wigs, cosmetic solutions, and psychological support. Prognosis varies widely depending on the subtype, extent of hair loss, and age of onset.
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsJules Bordet Institute — PHASE2
Icahn School of Medicine at Mount Sinai — PHASE2
Cairo University
Hayat Abad Medical Complex, Peshawar — PHASE4
Moogene Medi Co., Ltd — PHASE1, PHASE2
Wake Forest University Health Sciences — EARLY_PHASE1
Applied Biology, Inc. — PHASE1, PHASE2
Olistic Research Labs S.L. — NA
Jinnah Postgraduate Medical Centre — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Alopecia.
20 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Alopecia.
Community
No community posts yet. Be the first to share your experience with Alopecia.
Start the conversation →Latest news about Alopecia
Disease timeline:
New recruiting trial: Effects of Using a Storybook, to Explain Leukemia to Children Versus the Standard Child Life Intervention, on Parental Stress.
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: A Study to Evaluate Safety and Efficacy of OLX72021 in Healthy Males With Androgenetic Alopecia
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: Topical or Oral Minoxidil for the Treatment of Endocrine Therapy-Induced Alopecia in Patients With Stage I-IV Breast Cancer
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: HCW9302 (Interleukin-2 Fusion Protein) for Alopecia Areata
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: Pharmacokinetic Study of Topical Phenylephrine
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: Dupilumab in the Treatment of Pediatric Alopecia Areata
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: Evaluation of Latanoprost Combined With Fractional Erbium- YAG Laser
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: A Study to Evaluate the Safety and Effectiveness of Upadacitinib Tablets in Adult and Adolescent Participants With Severe Alopecia Areata
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: Scalp Hair Metabolomics in Severe Obesity
A new clinical trial is recruiting patients for Alopecia
New recruiting trial: Study to Evaluate the Efficacy and Safety of Deuruxolitinib in Adolescents With Severe Alopecia Areata
A new clinical trial is recruiting patients for Alopecia
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.
Common questions about Alopecia
What is Alopecia?
Alopecia, as referenced by Orphanet code 79364, refers to a group of rare forms of hair loss that can affect the scalp and other hair-bearing areas of the body. The term encompasses several distinct clinical entities, but in the context of rare disease classification, it typically refers to forms of alopecia that have a genetic or autoimmune basis beyond common androgenetic hair loss. Alopecia can range from patchy hair loss (alopecia areata) to complete loss of scalp hair (alopecia totalis) or total body hair loss (alopecia universalis). The condition primarily affects the integumentary syste
Are there clinical trials for Alopecia?
Yes — 20 recruiting clinical trials are currently listed for Alopecia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Alopecia?
25 specialists and care centers treating Alopecia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.