In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.
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.
Advocacy Day On Capitol Hill: What To Expect
Learn what to expect, where to go, what to say and more if you are attending the 2017 Ectodermal Dysplasias Advocacy Day on Capitol Hill.
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….