You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Ehlers-Danlos syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Ehlers-Danlos syndrome hub →Ehlers-Danlos syndrome is a rare condition. Also known as Cutis hyperelastica, EDS VIA, Ehlers-Danlos syndrome type 6A, Kyphoscoliotic EDS due to lysyl hydroxylase 1 deficiency, Lysyl hydroxylase-deficient EDS, Ocular-scoliotic EDS, kEDS-PLOD1, EDS. Tomeko brings together the specialists, research, clinical trials, treatments and community for Ehlers-Danlos syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:1900 · OMIM 225400 · ICD-10 Q79.6 · GARD 0006322
Start by learning the basics from an authoritative source, find a specialist or center that sees Ehlers-Danlos 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 Ehlers-Danlos syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Ehlers-Danlos syndrome from ClinicalTrials.gov on the hub.