Edimer

Foundations

• Australia – ozED
• Austria/Germany - Selbsthilfegruppe Ektodermale Dysplasie
• Denmark - Ectodermal Dysplasia Denmark
• France - Associacion Francaise Dysplasias Ectodermiques (AFDE)
• Italy - Associazione Nazionale Displasia Ectodermica (A.N.D.E.)
• Mexico - Asociacion Mexicana de Displasia Ectodermica
• Netherlands/Belgium/Luxemborg - Ectodermal Dysplasia the Netherlands
• Norway - Norsk ED-forening
• Spain – Asociacion de afectados por dysplasia ectodermica (A.A.D.E.)
• Sweden - Svenska Ed-foreningen
• Turkey - Ektodermal Displazi Grubu – Turkiye
• United Kingdom - Ectodermal Dysplasia Society
• United States – National Foundation for Ectodermal Dysplasias

 

International Patient Registry

The US National Foundation for Ectodermal Dysplasias (NFED) has launched an Ectodermal Dysplasias International Registry and is asking individuals affected by any ectodermal dysplasia to participate. More information can be found here: http://www.nfed.org/research_ed_registry.asp

 

Social Media

Facebook Groups

• I have HED
• US National Foundation for Ectodermal Dysplasias (NFED)
• UK Ectodermal Dysplasia Society

 

Blog

• Tarja Kelly’s: Living life to the full with Hypohidrotic Ectodermal Dysplasia

 

Videos

• US National Foundation for Ectodermal Dysplasia (NFED) video
• Living with Ectodermal Dysplasia - Luke & Lucy
• Living with Ectodermal Dysplasia – Simon

 

If you know of other patient communities, blogs, videos or resources that you would like to see listed please let us know by emailing info@edimerpharma.com.