miércoles, 23 de julio de 2014

Ectodermal Dysplasia, the Community - RareConnect

Ectodermal Dysplasia, the Community - 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 ...


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”. ...

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