On behalf of the NFED, I would like to convey our warmest gratitude for all the wonderful things you have done for us over the past year. Big things and small things, they all mean a lot to us. Your generous donation of your time and expertise helps us accomplish our mission every day. Since…
Freshman Entrepreneur Raises Money to Honor Sister
Avani Deshpande is not your typical ninth grader. She’s a compassionate entrepreneur who is raising awareness and funds for ectodermal dysplasias in honor of her sister. Avani’s passion for volunteering arose from watching her younger sister Matali live with ectodermal dysplasias. She wanted to make a difference by raising funds and awareness for the National…
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.
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 Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias (NFED) at…
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.