Just diagnosed with L1 syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees L1 syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive L1 syndrome hub →Overview
L1 syndrome is a rare condition. Also known as CRASH syndrome, Corpus callosum hypoplasia-retardation-adducted thumbs-spasticity-hydrocephalus syndrome, L1CAM syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for L1 syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:275543 · OMIM 303350, 304100, 307000 · ICD-10 Q04.8 · GARD 0012524
Find care for L1 syndrome
Authoritative references for L1 syndrome
Research & market landscape for L1 syndrome
Following L1 syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for L1 syndrome — the real-world landscape behind the condition, in one place.
- Latest L1 syndrome research on PubMed ↗
- Recruiting L1 syndrome trials on ClinicalTrials.gov ↗
- Explore the L1 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 L1 syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is L1 syndrome?
L1 syndrome is a rare condition. Also known as CRASH syndrome, Corpus callosum hypoplasia-retardation-adducted thumbs-spasticity-hydrocephalus syndrome, L1CAM syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for L1 syndrome together in one place.
What are the symptoms of L1 syndrome?
Symptoms of L1 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 L1 syndrome.
How is L1 syndrome treated?
Treatment for L1 syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see L1 syndrome, and review current options with them.
What causes L1 syndrome — is it genetic?
The cause and inheritance of L1 syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats L1 syndrome can explain what it means for you and your family.
I was just diagnosed with L1 syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees L1 syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for L1 syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat L1 syndrome, filtered to your area.
Are there clinical trials for L1 syndrome?
Tomeko shows live, recruiting studies for L1 syndrome from ClinicalTrials.gov on the hub.
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