You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Kousseff syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Kousseff syndrome hub →Kousseff syndrome is a rare condition. Also known as Sacral meningocele-conotruncal heart defects syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Kousseff syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:2351 · ICD-10 Q87.8 · GARD 0004752
Start by learning the basics from an authoritative source, find a specialist or center that sees Kousseff 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 Kousseff syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Kousseff syndrome from ClinicalTrials.gov on the hub.