You are not alone. Here is where to start: learn the basics, find a specialist or center that sees TARP syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full TARP syndrome hub →TARP syndrome is a rare condition. Also known as Pierre Robin sequence-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. Tomeko brings together the specialists, research, clinical trials, treatments and community for TARP syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:2886 · OMIM 311900 · ICD-10 Q87.8 · GARD 0010089
Start by learning the basics from an authoritative source, find a specialist or center that sees TARP syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat TARP syndrome, filtered to your area.
Tomeko shows live, recruiting studies for TARP syndrome from ClinicalTrials.gov on the hub.