I will never forget what it felt like to hear the words "there are no approved treatments." That moment changed my life. The CYFIP2 Network was born from that urgency. About CYFIP2-DEE disorders: CYFIP2 Developmental and Epileptic Encephalopathy (CYFIP2-DEE) is a severe, ultra-rare genetic epilepsy caused by pathogenic variants in the CYFIP2 gene (Cytoplasmic FMR1-Interacting Protein 2). The condition was first described in 2018, when de novo variants, particularly at the Arg