Big Plans for 2020

The NFED has new things in store for the ectodermal dysplasias community in 2020. Find out what we have planned and how you can be a part of it.

ELSA Gets Its First Hearing in the House

The Ensuring Lasting Smiles Act will get its first hearing in the House of Representatives. Kevin Koser will testify on behalf of individuals affected by congenital anomalies. Learn how you can help at this critical time.

Teen Advocate Wins Award

A teenager from Wisconsin captures national award for his courage to share his struggles with ectodermal dysplasias and create change.

First In Our Family

Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.

Health Insurance and Teeth

Find out what the NFED Is doing so that health insurance will cover your dental care – and how you can help. Plus, discover resources to help you file successful claims.

Our Special Grandson

Donna Garrett-Miller details how her grandson, Noah, was born with complications that led to an Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome diagnosis.

Help Us Crush Our 2019 Goals

You can help us crush our 2019 goals. Do you want to be a monster or a mummy? Want to bid on some great prizes? Or, could you make a few clicks to advocate for our important bill? We are looking for volunteers to help with all of these to improve lives for the ectodermal dysplasias community.