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…

Must See In Washington D.C.

Washington D.C. is not just our country’s capitol.  It is filled with delicious places to eat, cultural events and filled with American history. You can find it all in D.C.  Here are just a few of the many places you can visit while you are there during the Stand Together Conference.  You can also view…

Dad Works to Be Walking Billboard for NFED

Seth Ferris lives in Brooklyn, NY and is an avid volunteer. He not only volunteers for the National Foundation for Ectodermal Dysplasias (NFED) but also for the local soup kitchen, American Red Cross, and the Ambulance Corp. However, his primary focus and passion belongs to the NFED. Seth has been involved with the NFED for…

The Power of Sharing Our Journey with EEC Syndrome

An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.

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…

A Parent’s Persistence Pays Off

Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.

8 Tips for Getting Your Child To Wear Dentures

We asked our families for their best advice. Here’s what they said. Bribery! Determine treats or prizes that the child would earn for wearing their dentures “x” amount of time each day. Increase the times until he or she is wearing them all day, every day. You could do a star chart if they are…