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 De Barsy syndrome hub →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
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.
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat De Barsy syndrome, filtered to your area.
Tomeko shows live, recruiting studies for De Barsy syndrome from ClinicalTrials.gov on the hub.