Welcome - EEC syndrome Community

What is EEC syndrome ?

EEC syndrome is a genetic developmental disorder characterized by ectrodactyly, ectodermal dysplasia, and orofacial clefts (cleft lip/palate).

The three cardinal signs of the syndrome are ectrodactyly and syndactyly of the hands and feet, cleft lip with or without cleft palate (that can result in speech defects), and abnormalities in several ectodermal structures including skin (i.e. hypopigmentated and dry skin, hyperkeratosis, skin atrophy), hair (i.e. fine and sparse hair and eyebrows), teeth (small, absent or dysplastic teeth), nails (nail dystrophy) and exocrine glands (reduction/absence of sweat, sebaceous and salivary glands).

Source: Orphanet.

EEC syndrome Resources

More members stories

Latest Member Stories

My story with EEC syndrome

by Anatoli98 published 6 months ago

I write my story with EEC Syndrome, because I think it is important that this disease gets more acquaintance. Most people do not know at all what i...

Living with EEC syndrome

by RareConnect team published 9 months ago
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I was born on December, 4th 1996 in Tuzla (Bosnia and Herzegovina). War had ended roughly one year before.

At birth, my apparent malformations...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.