You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Legius syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Legius syndrome hub →Legius syndrome is a rare condition. Also known as NF1-like syndrome, Neurofibromatosis 1-like syndrome, Nonmosaic LGSS, Nonmosaic Legius syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Legius syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:137605 · OMIM 611431 · ICD-10 Q85.0 · GARD 0010714
Start by learning the basics from an authoritative source, find a specialist or center that sees Legius 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 Legius syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Legius syndrome from ClinicalTrials.gov on the hub.