Dear Santa

We know that you have been good this year so we wrote our own letter to Santa on behalf of you and all families affected by ectodermal dysplasias.

How to Turn Volunteering into a Presidential Service Award

Helping the NFED as a volunteer can add a Presidential Service Award to your resume or college application. We have numerous ways that you could help as a volunteer. Learn how. We offer several toolkits which make volunteering easy.

Announcing a Week of Action To Get You Dental Care Coverage

Next week, we will announce several opportunities in our Autumn is for Advocacy campaign for you to make your voice heard about the need for a bill for health benefits for dental care of ectodermal dysplasias.  Families, we need you to take action, to advocate.

Autumn is for Advocacy

Our families made a significant impact on Ectodermal Dysplasias Advocacy Day! We need everyone in our community to meet with their legislators. We give step by step directions. Ask them to support future legislation which will provide insurance benefits for dental care for all ectodermal dysplasias.  

5 Reasons Why We Need You on Capitol Hill

Ectodermal Dysplasias Advocacy Day approaches quickly and we need you, our National Foundation for Ectodermal Dysplasias (NFED) family, to be there. We try time and again to be advocates to all members of the NFED. But only you and your family are the ones who can make a difference in the lives of people affected…

A Summer of Ectodermal Dysplasias Research

It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….

Webinar: Advocating for Ectodermal Dysplasias

Presenters – Becky Abbott and Beth Pond, Chairs, NFED Advocacy Committee This webinar took place on Tuesday, May 16, 2017 and was recorded. Our advocacy goal is to get a federal law passed that would guarantee that insurance companies would be mandated to pay health insurance benefits for necessary medical care and treatment due to…