My son who is 2 1/2 yrs has been diagnosed with this syndrome. They are also testing for LADD syndrome. He has mild case of ED i think he does not have cleft palet,but cute little web toes!! I am just looking for info, stories and people who know what this syndrome is and what it means for my beautiful boy. Thank you

I noticed that it has been awhile since you have gotten on this site i am hoping that you are still current... my granddaughter was born Jan 16th and even tho i am in the nursing field i had never heard of ECC syndrome maybe someone can enlighten me and the trials and tribulations of this rare issue.

Hello everyone! My name is Mario and I'm the translation responsable for the p63 EEC International association based in Italy. Please feel free visiting our website www.sindrome-eec.it . We are here for you and we are glad to help you answering all your questions. If you want to contact us, please write to mario.adamo@bluewin.ch or presidenza-international@sindrome-ecc.it . Like I've said, we would be glad to hear from you. Peace and love <3

Thank you, I put in a request to join your group on facebook!