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Living with Isolated hereditary congenital facial paralysis

An extremely rare nerve condition present from birth in which some of the face muscles cannot move, on one or both sides.

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Understanding Isolated hereditary congenital facial paralysis

Isolated hereditary congenital facial paralysis is an extremely rare neurological condition with weakness or paralysis of the face from birth.

It is thought to result from poor development of the facial nerve or the nerve center that controls it. It does not get worse over time. It can affect one or both sides of the face, evenly or unevenly. GARD says it has been reported in fewer than 10 families.

Signs & symptoms

GARD doesn't list specific symptoms for this condition yet. Its summary describes this main feature:

  • Face paralysis (facial palsy) from birth
  • On one or both sides of the face
  • Does not get worse over time

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include brain and nervous system specialists, ear, nose, and throat specialists and genetic specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    World Craniofacial Foundation may keep lists of experts for this condition.

Care & treatment

Care team
Brain and nervous system specialists (neurologists); Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists)
Expert care
Expert lists: World Craniofacial Foundation
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with World Craniofacial Foundation and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Which branches of the facial nerve are affected?
How can we protect the eyes if they do not close well?
Would a genetics visit help us understand family risk?

Quick facts

Symptoms usually startNewborn and as an Infant
InheritanceAutosomal Dominant, Autosomal Recessive

GARD says changes in genes (also called variants) cause this condition. It can be inherited in an autosomal dominant way (one changed copy is enough) or an autosomal recessive way (a changed copy from each parent).

GeneticNeurological

Patient organizations

Source: NIH GARD · Isolated hereditary congenital facial paralysisGARD ID 8583 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Isolated hereditary congenital facial paralysis.

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Explore research for Isolated hereditary congenital facial paralysis

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