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     Ectodermal Dysplasia Society
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Parents

Being a parent is one of the most important jobs there is - it is also one of the hardest. The hours are long; there is no pay and not a lot of gratitude. Little attention is paid to preparing people for this vital role - yet parents are the key to giving children a happy and stable childhood.

We know only too well what it is like to receive the initial diagnosis, to be on an emotional rollercoaster, to experience the feelings of guilt, fear and anxiety and know the difficulties coping with the day to day management of ED.

We hope that our website will provide all the help, support and information you are seeking. If you do not find what you are looking for, then please log-on to our membership area. Signing up to our membership area only takes a couple of minutes or alternatively email diana@ectodermaldysplasia.org or telephone us direct on 01242 261332


Download our Living with ED document



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