Welcome to RSCN

Welcome to RSCN, The ROSAH Syndrome Community Network. Developed and supported by the Oakes Foundation.

ROSAH Syndrome is a relatively newly discovered condition, that is named due to presentation of several clinical features of Retinal dystrophy, Optic nerve edema, Splenomegaly, Anhidrosis, and migraine Headache. Since the discovery of the ALPK1 genetic mutation in 2013 many families have been discovered to carry the genetic defect.

This site intends to provide information about ROSAH Syndrome.

One thought on “Welcome to RSCN

Leave a Reply

Your email address will not be published. Required fields are marked *