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.
2016 Annual Impact Report
A Year of PROMISE. Perseverance. GROWTH. Creativity. Celebration. We are very excited to share with you the 2016 Annual IMPACT Report for the National Foundation for Ectodermal Dysplasias (NFED). In it, you can read how you, our families and supporters, have impacted on all areas of our mission. We thank everyone who supported us n…
NFED Members Participate in Advocacy Days
Advocacy continues to be a major emphasis for us in 2017. While we continue to plan for our Ectodermal Dysplasias Advocacy Day on Capitol Hill in July, we also recently participated in some other advocacy days. We are grateful to Becky Abbott, Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias…
No Longer Feel Isolated With AEC Syndrome
Learn about the Brown family’s journey when their daughter, Erin, was diagnosed with Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome. They also talk about how their NFED family has been a tremendous help over the last 5 years.
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!
The Missing Piece of the Puzzle
After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, Mom, Lindsay James, was tired. Thankfully, her google search led her to the NFED which became a beacon and filled their lives with light.
Make time to visit with your NFED family
By Meredith Grimes Our first National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week. We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…
Evan’s Story – Part III
By Karen Forman (Note: The following story is part three in a series written by Karen Forman, the mom to an adult son, Evan, who is affected by hypohidrotic ectodermal dysplasia. Read part one and two. ) My toddler, Evan, loved his new teeth and was happy to show anyone who wanted to look. I noticed…