Overview
Cleft lip/palate-ectodermal dysplasia syndrome is a very rare genetic condition that has been listed in medical databases but is now classified as obsolete, meaning it may have been reclassified, merged with another condition, or found to overlap significantly with other known syndromes. The condition was originally described as a combination of cleft lip and/or cleft palate (a gap or split in the upper lip or roof of the mouth present at birth) along with features of ectodermal dysplasia. Ectodermal dysplasia refers to a group of disorders that affect structures derived from the ectoderm, which includes the skin, hair, nails, teeth, and sweat glands. Patients with this condition may have had sparse or abnormal hair, missing or malformed teeth, dry skin, reduced ability to sweat, and the characteristic cleft lip or palate. Because this entry is now considered obsolete in Orphanet, patients who were previously diagnosed with this condition may now fall under a more specific or updated diagnosis, such as ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome (EEC syndrome), ankyloblepharon-ectodermal defects-cleft lip/palate syndrome (AEC syndrome, also known as Hay-Wells syndrome), or another ectodermal dysplasia variant. If you or a family member received this diagnosis, it is important to consult with a clinical geneticist to determine the most current and accurate diagnosis, as this can affect treatment planning, genetic counseling, and family screening.
Key symptoms:
Cleft lip (a split or gap in the upper lip)Cleft palate (an opening in the roof of the mouth)Sparse or thin hairMissing or abnormally shaped teethDry or flaky skinReduced ability to sweat or inability to sweatBrittle or abnormal nailsFeeding difficulties in infancySpeech difficultiesFrequent skin infectionsSensitivity to heat due to poor sweatingTear duct abnormalities or dry eyes
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome.
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 OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome.
Community
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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.
Questions for your doctor
Bring these to your next appointment
- Q1.Has this diagnosis been reclassified, and what is the most current name for my condition?,What specific genetic test should I have to confirm the exact diagnosis?,What is the recommended surgical timeline for cleft lip and palate repair?,How should I manage heat sensitivity and inability to sweat in daily life?,What dental treatments will be needed as my child grows?,Are there any clinical trials or new treatments being studied for this condition?,Should other family members be tested for this genetic condition?
Common questions about OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome
What is OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome?
Cleft lip/palate-ectodermal dysplasia syndrome is a very rare genetic condition that has been listed in medical databases but is now classified as obsolete, meaning it may have been reclassified, merged with another condition, or found to overlap significantly with other known syndromes. The condition was originally described as a combination of cleft lip and/or cleft palate (a gap or split in the upper lip or roof of the mouth present at birth) along with features of ectodermal dysplasia. Ectodermal dysplasia refers to a group of disorders that affect structures derived from the ectoderm, whi
At what age does OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome typically begin?
Typical onset of OBSOLETE: Cleft lip/palate-ectodermal dysplasia syndrome is neonatal. Age of onset can vary across affected individuals.