Just diagnosed with De Barsy syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees De Barsy syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive De Barsy syndrome hub →Overview
De Barsy syndrome is a rare condition. Also known as Cutis laxa-corneal clouding-intellectual disability syndrome, Progeroid syndrome, De Barsy type. Tomeko brings together the specialists, research, clinical trials, treatments and community for De Barsy syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:2962 · OMIM 219150, 614438 · ICD-10 Q87.0 · GARD 0000049
Find care for De Barsy syndrome
Authoritative references for De Barsy syndrome
Research & market landscape for De Barsy syndrome
Following De Barsy syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for De Barsy syndrome — the real-world landscape behind the condition, in one place.
- Latest De Barsy syndrome research on PubMed ↗
- Recruiting De Barsy syndrome trials on ClinicalTrials.gov ↗
- Explore the De Barsy 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 De Barsy syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is De Barsy syndrome?
De Barsy syndrome is a rare condition. Also known as Cutis laxa-corneal clouding-intellectual disability syndrome, Progeroid syndrome, De Barsy type. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for De Barsy syndrome together in one place.
What are the symptoms of De Barsy syndrome?
Symptoms of De Barsy 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 De Barsy syndrome.
How is De Barsy syndrome treated?
Treatment for De Barsy syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see De Barsy syndrome, and review current options with them.
What causes De Barsy syndrome — is it genetic?
The cause and inheritance of De Barsy syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats De Barsy syndrome can explain what it means for you and your family.
I was just diagnosed with De Barsy syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees De Barsy syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for De Barsy syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat De Barsy syndrome, filtered to your area.
Are there clinical trials for De Barsy syndrome?
Tomeko shows live, recruiting studies for De Barsy syndrome from ClinicalTrials.gov on the hub.
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