Living with Cleft lip-retinopathy syndrome
An extremely rare combination of cleft lip and a retina condition that worsens over time.
Understanding Cleft lip-retinopathy syndrome
GARD gives only a short description of this condition.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but the summary names:
- Cleft lip
- Retina disease that worsens over time
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 doesn't describe a cause for this condition yet.
Also known as: ausems wittebol post hennekam syndrome; ausems-wittebol post-hennekam syndrome; cleft lip retinopathy syndrome; cleft lip-cone rod dystrophy syndrome; cleft lip-progressive retinopathy syndrome
Patient organizations
- FACES: The National Craniofacial AssociationCleft lip-retinopathy syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Cleft lip-retinopathy syndrome.
Explore research for Cleft lip-retinopathy syndrome
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- Eligibility is confirmed by the study team
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