Living with Isolated cleft palate
A condition present from birth in which the roof of the mouth has an opening because the two sides did not join during development.
Understanding Isolated cleft palate
The opening can involve the hard palate, the soft palate, or both. It happens when the two sides of the palate fail to join during early development in the womb. "Isolated" means it occurs without other conditions.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes this main feature:
- Opening in the roof of the mouth (hard and/or soft palate)
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 rare disease patient organizations for support
- 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
It happens when the two sides of the palate do not fuse during development before birth. GARD lists autosomal dominant inheritance, meaning one changed copy of a gene is enough.
Also known as: nonsyndromic cleft palate
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Isolated cleft palate.
Explore research for Isolated cleft palate
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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