Just diagnosed with Susac syndrome?
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 interactive Susac syndrome hub →Overview
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
Find care for Susac syndrome
Authoritative references for Susac syndrome
Research & market landscape for Susac syndrome
Following Susac syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Susac syndrome — the real-world landscape behind the condition, in one place.
- Latest Susac syndrome research on PubMed ↗
- Recruiting Susac syndrome trials on ClinicalTrials.gov ↗
- Explore the Susac syndrome research & specialist footprint on Tomeko
Researchers, patient organizations & industry: Tomeko provides de-identified, no-PHI demand and engagement signal, trial awareness, and a labeled, editorially-firewalled presence for Susac syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Susac syndrome?
Susac syndrome is a rare condition. Also known as Retinocochleocerebral vasculopathy. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Susac syndrome together in one place.
What are the symptoms of Susac syndrome?
Symptoms of Susac syndrome vary from person to person. For a reviewed, plain-language overview see the authoritative references below (NIH GARD, Orphanet), and discuss your own symptoms with a clinician who treats Susac syndrome.
How is Susac syndrome treated?
Treatment for Susac syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Susac syndrome, and review current options with them.
What causes Susac syndrome — is it genetic?
The cause and inheritance of Susac syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Susac syndrome can explain what it means for you and your family.
I was just diagnosed with Susac syndrome — what should I do first?
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.
Where can I find a specialist for Susac syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Susac syndrome, filtered to your area.
Are there clinical trials for Susac syndrome?
Tomeko shows live, recruiting studies for Susac syndrome from ClinicalTrials.gov on the hub.
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