Welcome - Ectodermal Dysplasia Community
What is Ectodermal Dysplasia ?
The term ''ectodermal dysplasia'' defines a heterogeneous group of heritable disorders of the skin and its appendages characterized by the defective development of two or more ectodermal derivatives, including hair, teeth, nails, sweat glands and their modified structures (i.e. ceruminous, mammary and ciliary glands). The spectrum of clinical manifestations is wide and may include additional manifestations from other ectodermal, mesodermal and endodermal structures.
Latest Member Stories
Hello I am William born on 14.08.2014 in Italy. I came to the world in the 38th week. At birth a wound was formed on the back of my head. I don’t k...
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.
- International Ectodermal Dysplasia Network
- ozED- Australian Ectodermal Dysplasia Support Group
- Contact person in Egypt
- Association Française des Dysplasies Ectodermiques
- Selbsthilfegruppe Ektodermale Dysplasie e.V. .
- Ectodermal Dysplasia Society
- A.N.D.E. Onlus Associazione Nazionale Displasia Ectodermica
- Asociación Mexicana de Displasia Ectodérmica Mariana
- Ectodermale Dysplasie België
- Contact person in Pakistan
- South Africa
- Asociación Española de Afectados por Displasia Ectodérmica
- Contact person in Argentina
- ЭДДИ Russia