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.

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…

When Life throws you a Lemon, make Lemonade!

By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….