Living with Van der Woude syndrome
A genetic condition affecting how the face forms, often with cleft lip or palate and small pits in the lower lip.
Understanding Van der Woude syndrome
Many people are born with cleft lip, cleft palate, or both. Most have small pits near the center of the lower lip. Some have missing teeth. As with other clefts, there is a higher chance of delayed language or learning problems, but GARD says average IQ is not different from the general population.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cleft palate
- Pits in the lower lip
- Cleft lip
- Missing teeth
- Split uvula (bifid uvula)
- Tongue-tie
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include ear, nose, and throat specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Cleft Palate Craniofacial Association and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: American Cleft Palate Craniofacial Association, 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 American Cleft Palate Craniofacial Association 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
Quick facts
GARD says it is inherited in an autosomal dominant way, meaning a changed gene from one parent can be enough. It doesn't name the gene here.
Also known as: cleft lip/palate with mucous cysts of lower lip; lip-pit syndrome; lip-pit-cleft lip syndrome; vws
Patient organizations
- American Cleft Palate Craniofacial AssociationVan der Woude syndrome · United States
- FACES: The National Craniofacial AssociationVan der Woude syndrome · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Van der Woude syndrome.
Explore research for Van der Woude syndrome
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- Eligibility is confirmed by the study team
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