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ectodermal dysplasia

jndm Message
7 Nov 2009, 07:22 AM

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
bcasteel0001 Message
8 Feb 2013, 04:10 AM

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.
Rebelheart70 Message
9 Feb 2013, 04:18 AM

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 . 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 or . Like I've said, we would be glad to hear from you. Peace and love <3
bcasteel0001 Message
9 Feb 2013, 04:57 AM

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