Overview
Facial cleft is a broad term encompassing a group of rare congenital malformations characterized by abnormal fissures or gaps in the structures of the face. These clefts result from failure of fusion of the facial processes during embryonic development, typically between the 4th and 8th weeks of gestation. Facial clefts can range from common orofacial clefts (cleft lip and/or cleft palate) to rare oblique, lateral, or median facial clefts. The Tessier classification system is commonly used to categorize these clefts numerically (0–14) based on their anatomical location, involving soft tissue and underlying bony structures. Facial clefts affect multiple structures of the face and skull, including the lips, palate, nose, orbits, cheeks, and forehead. Key clinical features depend on the type and severity of the cleft and may include visible gaps or fissures in facial soft tissues, bony defects of the maxilla, mandible, or orbital bones, nasal deformities, orbital dystopia (abnormal positioning of the eyes), and dental anomalies. Feeding difficulties, speech impairment, hearing problems, and psychosocial challenges are common functional consequences. Some facial clefts occur as isolated malformations, while others may be part of broader syndromic conditions involving additional organ systems. The etiology of facial clefts is considered multifactorial in most cases, involving a combination of genetic susceptibility and environmental factors such as maternal nutrition, medication exposure, and other teratogens. Treatment is primarily surgical and often requires a multidisciplinary team approach including craniofacial surgeons, orthodontists, speech therapists, audiologists, and psychologists. Multiple staged surgical procedures may be necessary over the course of childhood and adolescence to reconstruct affected structures and optimize functional and aesthetic outcomes. Supportive therapies for feeding, speech, and hearing are integral components of comprehensive care.
Also known as:
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Facial cleft.
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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 Facial cleft.
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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 Facial cleft
What is Facial cleft?
Facial cleft is a broad term encompassing a group of rare congenital malformations characterized by abnormal fissures or gaps in the structures of the face. These clefts result from failure of fusion of the facial processes during embryonic development, typically between the 4th and 8th weeks of gestation. Facial clefts can range from common orofacial clefts (cleft lip and/or cleft palate) to rare oblique, lateral, or median facial clefts. The Tessier classification system is commonly used to categorize these clefts numerically (0–14) based on their anatomical location, involving soft tissue a
How is Facial cleft inherited?
Facial cleft follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Facial cleft typically begin?
Typical onset of Facial cleft is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Facial cleft?
13 specialists and care centers treating Facial cleft are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.