You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Barber-Say syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Barber-Say syndrome hub →Barber-Say syndrome is a rare condition. Also known as Hypertrichosis-atrophic skin-ectropion-macrostomia syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Barber-Say syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:1231 · OMIM 209885 · ICD-10 Q87.0 · GARD 0000819
Start by learning the basics from an authoritative source, find a specialist or center that sees Barber-Say 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 Barber-Say syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Barber-Say syndrome from ClinicalTrials.gov on the hub.