Living with TARP syndrome
A rare X-linked condition in males with clubfoot, a heart opening, a small jaw, and a cleft palate.
Understanding TARP syndrome
TARP stands for Talipes equinovarus (clubfoot), Atrial septal defect (a hole between the upper heart chambers), Robin sequence, and Persistent left superior vena cava. Robin sequence means a small lower jaw that makes feeding hard, a tongue that sits back, and often a cleft palate. Signs may begin during pregnancy or in the newborn period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Clubfoot
- Hole between the upper heart chambers
- Small lower jaw and cleft palate
- Tongue that sits back (glossoptosis)
- Low muscle tone and delayed development
- Slow growth and weight gain
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 brain and nervous system specialists, ear, nose, and throat specialists, genetic specialists and heart and blood vessel specialists.
- 3Consider genetic testing
Changes in RBM10 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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
- Brain and nervous system specialists (neurologists); Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- 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
Changes in the RBM10 gene cause this condition. It is X-linked recessive, meaning the gene is on the X chromosome.
Also known as: pierre robin sequence-congenital heart defect-talipes syndrome; pierre robin sequence, congenital heart defect, talipes syndrome; pierre robin syndrome with congenital heart malformation and clubfoot; pierre robin syndrome-congenital heart defect-talipes syndrome; pierre robin syndrome, congenital heart defect, talipes syndrome; talipes equinovarus-atrial septal defect-robin sequence-persistence of the left superior vena cava syndrome
Patient organizations
- American Cleft Palate Craniofacial AssociationTARP syndrome · United States
- 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 TARP syndrome.
Explore research for TARP syndrome
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