Just diagnosed with Oculocerebrocutaneous syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Oculocerebrocutaneous syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Oculocerebrocutaneous syndrome hub →Overview
Oculocerebrocutaneous syndrome is a rare condition. Also known as Delleman syndrome, Delleman-Oorthuys syndrome, Leichtman-Wood-Rohn syndrome, OCCS, Orbital cyst with cerebral and focal dermal malformations. Tomeko brings together the specialists, research, clinical trials, treatments and community for Oculocerebrocutaneous syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:1647 · OMIM 164180 · ICD-10 Q87.8 · GARD 0000106
Find care for Oculocerebrocutaneous syndrome
Authoritative references for Oculocerebrocutaneous syndrome
Research & market landscape for Oculocerebrocutaneous syndrome
Following Oculocerebrocutaneous syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Oculocerebrocutaneous syndrome — the real-world landscape behind the condition, in one place.
- Latest Oculocerebrocutaneous syndrome research on PubMed ↗
- Recruiting Oculocerebrocutaneous syndrome trials on ClinicalTrials.gov ↗
- Explore the Oculocerebrocutaneous 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 Oculocerebrocutaneous syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Oculocerebrocutaneous syndrome?
Oculocerebrocutaneous syndrome is a rare condition. Also known as Delleman syndrome, Delleman-Oorthuys syndrome, Leichtman-Wood-Rohn syndrome, OCCS, Orbital cyst with cerebral and focal dermal malformations. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Oculocerebrocutaneous syndrome together in one place.
What are the symptoms of Oculocerebrocutaneous syndrome?
Symptoms of Oculocerebrocutaneous 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 Oculocerebrocutaneous syndrome.
How is Oculocerebrocutaneous syndrome treated?
Treatment for Oculocerebrocutaneous syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Oculocerebrocutaneous syndrome, and review current options with them.
What causes Oculocerebrocutaneous syndrome — is it genetic?
The cause and inheritance of Oculocerebrocutaneous syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Oculocerebrocutaneous syndrome can explain what it means for you and your family.
I was just diagnosed with Oculocerebrocutaneous syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Oculocerebrocutaneous syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Oculocerebrocutaneous syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Oculocerebrocutaneous syndrome, filtered to your area.
Are there clinical trials for Oculocerebrocutaneous syndrome?
Tomeko shows live, recruiting studies for Oculocerebrocutaneous syndrome from ClinicalTrials.gov on the hub.
Related conditions
Other conditions on Tomeko you may be looking for: