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…
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.
Dentures for Kids
The NFED has always strongly advocated that children with ectodermal dysplasia get dentures by the time they start Kindergarten. Find out why and how the NFED can help pay for them.
Advocacy Strategy Shifts to Federal Level
Again, over the past month, we have received numerous calls from individuals who are desperately trying to get insurance coverage for their or their child’s dental treatment. It is exhausting!
13 Things Ectodermal Dysplasias Families Wish You Knew
Helping others understand what it’s like to live with ectodermal dysplasias is one of our goals for Ectodermal Dysplasias Awareness Month. Here are 13 things some families affected by the rare condition wish you knew. I wish people knew that they all are braver than you think, stronger than they seem, and smarter than you think!…
From Shy to Smiling Spokesperson for Ectodermal Dysplasias
By Dawn Richardson I rarely had to trim Savannah’s toenails after she was born, and her fingernails were thin and brittle. I had very little experience with infants, so I did not realize this is not typical of children. Her baby teeth erupted mostly on schedule. Aside from being small and missing a set of…
Volunteers Needed For A New NIH Study For Craniofacial Anomalies
Doctors at the National Institutes of Health (NIH) are conducting a study that will identify the conditions of craniofacial abnormalities, including ectodermal dysplasias, in an effort to develop treatments specific to the type of the condition. The research team invites volunteers with the condition, their family members, and healthy volunteers to participate.
We Are Flying High!
We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…