You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Susac syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Susac syndrome hub →Susac syndrome is a rare condition. Also known as Retinocochleocerebral vasculopathy. Tomeko brings together the specialists, research, clinical trials, treatments and community for Susac syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:838 · ICD-10 I67.7 · GARD 0007713
Start by learning the basics from an authoritative source, find a specialist or center that sees Susac 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 Susac syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Susac syndrome from ClinicalTrials.gov on the hub.