National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

CALL US AT (618) 566-2020

We're here to help

Facebook Communities

Connect With People Who Understand

Information and support are important to managing ectcodermal dysplasias. Who better to share you challenges and triumphs with than a group who understands what it is really like to live with ectodermal dysplasias?

Step #1 - Register with the NFED. 

We have vital information to share with you. Our staff can listen and help you. They can also connect you with other families from your area, with your syndrome, or who have experienced similar issues.

Step #2 - Like our Facebok page and Join our Facebook groups. 

Ask questions.    Share thoughts.    Join the conversation online.


Our Facebook Page


Our Private Facebook Groups

For the private groups, we do restrict group memberships to the intended audience. Join a group today! Do you have an idea for a group you would like us to have? Let us know.

AEC Syndrome

EEC Syndrome

Hypohidrotic Ectodermal Dysplasia

Help Find A Cure for Focal Dermal Hypoplasia (FDH)/AKA Goltz Syndrome

Ectodermal Dysplasias Affected Adults Ask Me Anything

Ectodermal Dysplasias Young Affected Adults (Ages 18-40)

Women with ED

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Individuals Affected By Ectodermal Dysplasia



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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360