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Mr. and Mrs. Weirdo and Goofball

Growing up affected by hypohidrotic ectodermal dysplasia, Everett Hamilton never dreamed he would marry or have kids. Then, Sarah asked him on a first date and all of that changed.

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.

Expanding Our Skin, ENT and Eye Expertise

We simply could not put a price tag on the value the volunteer doctors add to our Scientific Advisory Council (SAC) and our organization. We rely on their talents to lead our research program, present educational workshops at Family Conferences, write educational materials and talk with families one-on-one. They bring incredible expertise to our mission. We are honored to have added three new physicians to the SAC.

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.

Using M&Ms to Teach About Ectodermal Dysplasia

The following presentation is a very simple way to introduce the ectodermal dysplasia to your child’s classmates and teachers. We published this article years ago but it’s still a great idea for parents to use in their child’s classroom. Levi is now an adult who has his own family! By Kim Howard My son’s name…

Launching a Major Research Campaign

We stand at an unprecedented time in history. Preliminary findings from research show great promise for eradicating two symptoms of the most common k ind of ectodermal dysplasia. It’s extraordinary! But without funding, this research study and others will not continue. We are launching the “Impact Cures, Now” campaign to raise $300,000 in the next three years for ectodermal dysplasias research.