You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Proteus syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Proteus syndrome hub →Proteus syndrome is a rare condition. Also known as Partial gigantism-nevi-hemihypertrophy-macrocephaly syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Proteus syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:744 · OMIM 176920 · ICD-10 Q87.3 · GARD 0007475
Start by learning the basics from an authoritative source, find a specialist or center that sees Proteus 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 Proteus syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Proteus syndrome from ClinicalTrials.gov on the hub.