Overview
Lewis-Pashayan syndrome is a very rare condition that affects how a baby's face and head develop before birth. It is also sometimes called hypotelorism-cleft palate syndrome or the Lewis-Pashayan hypotelorism syndrome. The most noticeable features involve the face, including eyes that are set unusually close together (a condition called hypotelorism), a cleft palate (an opening in the roof of the mouth), and other differences in the structure of the face and skull. Some children may also have differences in the shape of the nose and other facial bones. Because this condition affects the face and mouth, children may have difficulty feeding, speaking, and breathing in early life. A cleft palate can make it hard for babies to suck and swallow, which may require special feeding support or surgery. The close-set eyes may affect vision and depth perception. Treatment focuses on managing each symptom individually. Surgery is often used to repair the cleft palate, usually in the first year or two of life. A team of specialists — including surgeons, speech therapists, and eye doctors — typically works together to support the child. There is no cure for the underlying condition, but with the right care, many children can lead fulfilling lives.
Also known as:
Key symptoms:
Eyes set unusually close together (hypotelorism)Cleft palate (opening in the roof of the mouth)Differences in the shape of the noseUnusual facial bone structureFeeding difficulties in infancySpeech and language delaysPossible vision problems due to eye positioning
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Lewis-Pashayan syndrome.
View clinical trials →Clinical Trials
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Specialists
View all specialists →No specialists are currently listed for Lewis-Pashayan 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 Lewis-Pashayan 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.What specialists should be part of my child's care team, and how often should we see each one?,When should cleft palate surgery be scheduled, and what should we expect during recovery?,Should we have genetic testing done, and what might it tell us about the cause and recurrence risk?,What feeding strategies or tools are recommended for my baby right now?,How will we monitor my child's vision and eye development over time?,What early intervention services — such as speech therapy — should we start, and when?,Are there any support groups or resources for families dealing with craniofacial conditions?
Common questions about Lewis-Pashayan syndrome
What is Lewis-Pashayan syndrome?
Lewis-Pashayan syndrome is a very rare condition that affects how a baby's face and head develop before birth. It is also sometimes called hypotelorism-cleft palate syndrome or the Lewis-Pashayan hypotelorism syndrome. The most noticeable features involve the face, including eyes that are set unusually close together (a condition called hypotelorism), a cleft palate (an opening in the roof of the mouth), and other differences in the structure of the face and skull. Some children may also have differences in the shape of the nose and other facial bones. Because this condition affects the face
How is Lewis-Pashayan syndrome inherited?
Lewis-Pashayan syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Lewis-Pashayan syndrome typically begin?
Typical onset of Lewis-Pashayan syndrome is neonatal. Age of onset can vary across affected individuals.