Living with PARC syndrome
A rare genetic condition present from birth with skin color changes, hair loss, a small chin, and cleft palate.
Understanding PARC syndrome
The name stands for poikiloderma (skin color and texture changes), alopecia (hair loss), retrognathism (a small, set-back chin), and cleft palate. Signs are seen in newborns and infants. GARD notes there have been no further descriptions in the medical literature since 1990.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Skin color and texture changes (poikiloderma)
- Hair loss (alopecia)
- No eyebrows or eyelashes
- Small, set-back chin
- Cleft 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
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
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: 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
Quick facts
Changes in the genes (also called variants) cause this condition. It is autosomal dominant, which means one changed copy of the gene is enough to cause it. GARD doesn't list a specific gene.
Also known as: parc (poikiloderma, alopecia, retrognathism, cleft palate) syndrome; poikiloderma-alopecia-retrognathism-cleft palate syndrome; poikiloderma, alopecia, retrognathism, and cleft palate; poikiloderma, alopecia, retrognathism, cleft palate syndrome
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with PARC syndrome.
Explore research for PARC syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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