Overview
Isolated hereditary congenital facial paralysis (also called hereditary congenital facial paresis or familial congenital facial palsy) is a rare condition present from birth in which one or both sides of the face cannot move properly due to problems with the facial nerve (the seventh cranial nerve). Unlike other forms of facial paralysis that occur alongside additional birth defects or syndromes, this condition affects only the facial nerve without other major abnormalities. Babies born with this condition may have difficulty closing one or both eyes, an asymmetric cry or smile, trouble with feeding or sucking, and a flat or expressionless appearance on the affected side of the face. The paralysis can range from mild weakness to complete inability to move the facial muscles on the affected side. This condition runs in families and is typically inherited in an autosomal dominant pattern, meaning a child needs only one copy of the altered gene from one parent to be affected. In some families, the condition has been linked to changes in genes involved in the development of the facial nerve during pregnancy. Because the facial nerve controls many important functions — including facial expression, eye closure, and some aspects of taste and saliva production — people with this condition may face challenges with eye protection, eating, drinking, and social communication throughout life. There is currently no cure for isolated hereditary congenital facial paralysis. Treatment focuses on managing symptoms and preventing complications. This may include eye protection measures (such as lubricating drops or taping the eye shut at night), physical therapy to maintain muscle tone, speech therapy to help with feeding and communication, and in some cases, surgical procedures to improve facial symmetry or function. Early intervention and a multidisciplinary care team can significantly improve quality of life.
Key symptoms:
Inability to move one or both sides of the faceAsymmetric crying or smilingDifficulty closing one or both eyes completelyDrooping of one side of the faceDifficulty with breastfeeding or bottle feeding in infancyDrooling due to poor lip closureFlat or expressionless appearance on the affected sideDry eye or excessive tearing on the affected sideDifficulty with speech sounds that require lip movementReduced or absent ability to raise the eyebrow on the affected sideCorneal irritation or ulcers from incomplete eye closureDifficulty blowing or whistling
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Isolated hereditary congenital facial paralysis.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Isolated hereditary congenital facial paralysis at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Isolated hereditary congenital facial paralysis.
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 Isolated hereditary congenital facial paralysis.
Community
No community posts yet. Be the first to share your experience with Isolated hereditary congenital facial paralysis.
Start the conversation →Latest news about Isolated hereditary congenital facial paralysis
No recent news articles for Isolated hereditary congenital facial paralysis.
Follow this condition to be notified when news becomes available.
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.How severe is the facial paralysis, and is it on one side or both sides?,What steps should we take to protect the eyes from damage?,Should we pursue genetic testing, and what would the results mean for our family?,What therapies (speech, physical) would benefit my child at this stage?,At what age should we consider surgical options for facial reanimation?,Are there any other conditions we should screen for to make sure this is truly isolated?,What resources are available for emotional and social support for my child?
Common questions about Isolated hereditary congenital facial paralysis
What is Isolated hereditary congenital facial paralysis?
Isolated hereditary congenital facial paralysis (also called hereditary congenital facial paresis or familial congenital facial palsy) is a rare condition present from birth in which one or both sides of the face cannot move properly due to problems with the facial nerve (the seventh cranial nerve). Unlike other forms of facial paralysis that occur alongside additional birth defects or syndromes, this condition affects only the facial nerve without other major abnormalities. Babies born with this condition may have difficulty closing one or both eyes, an asymmetric cry or smile, trouble with f
How is Isolated hereditary congenital facial paralysis inherited?
Isolated hereditary congenital facial paralysis follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Isolated hereditary congenital facial paralysis typically begin?
Typical onset of Isolated hereditary congenital facial paralysis is neonatal. Age of onset can vary across affected individuals.