Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown. Now 19, Jayden is a thrill seeker! Learn more about his extensive medical journey, his passions and the special message he has for others with ectodermal dysplasias who find it hard to smile.
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.
Seventy-Five Strong
We thank our hard-working volunteers for the hours they so generously dedicated to the 2019 NFED Family Conference. Without them, this event would not be possible.
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.
First Advocacy Day Was a Landmark in NFED History
Our first Ectodermal Dysplasias Advocacy Day was an extraordinary moment in the history NFED. 175 people stormed Capitol Hill to educate our Congress.
Ectodermal Dysplasias Dental Treatment Center Opens in New York
Families in New York now have a National Foundation for Ectodermal Dysplasias (NFED) Dental Treatment Center in their community. We are excited to announce our new partnership with the New York Center for Orthognathic and Maxillofacial Surgery (NYCOMS) to provide quality dental care and more affordable costs for individuals affected by ectodermal dysplasias. Helping families affected…
8 Things You Should Expect From Your Dental Care Team
The oral manifestations of the ectodermal dysplasias are often complex, and affected individuals might benefit from a team approach to evaluation and planning for treatment. Do not accept all team members as being equally trained and experienced. Ask questions… about the training of key individuals on the team; about the format for team meetings; about…
An Update from Carver
By Carver Claeys For as long as I can remember, I’ve had dentures. My mother made the sacrifices to give me the opportunity to feel like all of the other children who were smiling for one reason or another. Laughter on the playground with your friends. Smiling at your childhood sweetheart. My mother didn’t want…