Living with Van der Woude syndrome 2
A genetic condition with pits in the lower lip and cleft lip or palate, and the most common cleft syndrome.
Understanding Van der Woude syndrome 2
GARD describes Van der Woude syndrome as the most common cleft syndrome. This record is for a subtype, VWS2. It may also involve missing teeth or a bad bite.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cleft palate
- Cleft upper lip
- Pits in the lower lip
- Missing teeth
- Bad bite
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 FACES: The National Craniofacial Association
- 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 a gene for this type.
Also known as: grhl3 van der woude syndrome; van der woude syndrome caused by mutation in grhl3; van der woude syndrome type 2; vws2
Patient organizations
- FACES: The National Craniofacial AssociationVan der Woude syndrome 2 · United States
You are more than your diagnosis
Perspectives from people navigating life with Van der Woude syndrome 2.
Explore research for Van der Woude syndrome 2
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- Eligibility is confirmed by the study team
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