Useful links  


The International Ectodermal Dysplasia Network (IEDN) is an umbrella organisation which facilitates greater collaboration and co-operation between the Ectodermal Dysplasia organisation Leaders around the world who are working together to assimilate information.


Edimer Pharmaceuticals - Dedicated to developing EDI200 as a treatment for X-linked Hypohidrotic Ectodermal Dysplasia (XLHED).

America - National Foundation for Ectodermal Dysplasias (NFED)

Argentina- ADEA Asociacion Displasia Ectodermica Argentina

Australia - Australian Ectodermal Dysplasia Support Group (ozED)

Belgium - Ectodermal Dysplasie Belgie

Brazil - (e-mail link)

Canada - Canadian Ectodermal Dysplasia Syndromes Association (CEDSA)

China - (e-mail link)

Denmark - Ectodermal Dysplasia Dk

Egypt - (e-mail link)

France - Association Francaise Dysplasies Ectodermiques (AFDE)

Germany/Austria/Switzerland - Selbsthilfegruppe Ektodermale Dysplasie e.V.

Hungary - (e-mail link)

Ireland - Ectodermal Dysplasia Society (e-mail link)

Italy - Associazione Nazionale Displasia Ectodermica (ANDE)

Mexico - Aasociacion Mexicana de Displasia Ectodermica Mariana, A.C (AMDEM)

Netherlands/Belgium/Luxemburg -Ectodermal Dysplasia the Netherlands

Norway - Norsk ED fororening

Pakistan - (e-mail link)

Poland - Jestesmy

Russia - Etodermal dysplasia Russia

Singapore - (e-mail link)

South Africa - (e-mail link)

Spain - Asociacion de Afectados por Displasia Ectodermica (AADE)

Sweden - Svenska Ed-föreningenv

Turkey - Ektodermal Displazi Grubu - Turkiyev

United Kingdom - Ectodermal Dysplasia Society

Other useful links

Click on the relevant link below and you will be taken to their website:

AIEEC Associazione Italiana EEC - Italy (e-mail Link)

Sindrome EEC International - Italy

XLPDR International Association - Italy

The NFED currently have a Registry which is a resource by which individuals and families affected by the Ectodermal Dysplasias and researchers working on approved Ectodermal Dysplasias research projects can be connected. The Registry will also help to characterize the Ectodermal Dysplasias.