Ectodermal Dysplasia, the Community - RareConnect

Ectodermal Dysplasia, the Community - RareConnect

RARECONNECT

Online Communities for Rare Disease Patients RareConnect announces a new international online community for patients living with Ectodermal Dysplasia (ED) 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. Source: Orphanet Ectodermal Dysplasia Resources More members stories Latest Member Stories Jose´s Testimony in Brief. Enjoy it ! by jose1967 published 4 days ago 6 commentsI was born with ED in a hot summer day of August. It happened in Madrid (Spain) and I always wonder how I survived in such weather conditions with ... More The history of ozED Camphrences by andrewwilliams published 5 days ago 3 commentsThe History of the ozED Camphrence In 2004, not long after we were formed, I had the opportunity to go to a good friends “Buck’s Night”. ... More Partners and Patient Groups RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community. International Ectodermal Dysplasia Network   ozED- Australian Ectodermal Dysplasia Support Group   Egypt Association Française des Dysplasies Ectodermiques   Selbsthilfegruppe Ektodermale Dysplasie e.V. .   Ectodermal Dysplasia Society Hungary   A.N.D.E. Onlus Associazione Nazionale Displasia Ectodermica   Asociación Mexicana de Displasia Ectodérmica Mariana Ectodermale Dysplasie België   Pakistan   ЭДДИ South Africa   Asociación Española de Afectados por Displasia Ectodérmica   Turkey Argentina