You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Schuurs-Hoeijmakers syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Schuurs-Hoeijmakers syndrome hub →Schuurs-Hoeijmakers syndrome is a rare condition. Also known as PACS1-related NDD, PACS1-related neurodevelopmental disorder, PACS1-related syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Schuurs-Hoeijmakers syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:329224 · OMIM 615009 · ICD-10 Q87.0 · GARD 0013043
Start by learning the basics from an authoritative source, find a specialist or center that sees Schuurs-Hoeijmakers 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 Schuurs-Hoeijmakers syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Schuurs-Hoeijmakers syndrome from ClinicalTrials.gov on the hub.