More than forty years ago, a group of people came together with a shared goal: to help those with ectodermal dysplasias. Today, the National Foundation for Ectodermal Dysplasias (NFED) is a global leader in supporting and advocating for those affected by ectodermal dysplasias. In 2022, the NFED provided support to nearly 10,000 affected individuals worldwide.
ELSA Advocates Raise Their Voices in DC at NFED Hill Day
The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what’s happening next for this important legislation.
New Child Psychologist on SAC To Create Resources You Need
The NFED is proud to welcome Dr. Patricia Marik to our Scientific Advisory Council. Learn what drew her to the NFED and how she aspires to help families affected by ectodermal dysplasias with their emotional health.
Being Born Without Adult Teeth: From Resentment to Empowerment
Soren Roe used to hide the fact that he’s missing teeth. Now, he uses it as an opening line when he meets new people. Read how this 24-year-old has faced his fears and realized how ectodermal dysplasia has shaped his life.
How Belonging to the NFED Has Benefitted 14 Families
Are you a part of the largest organization for families affected by ectodermal dysplasias? Some of our members weighed in on what they have found to be the biggest benefit of joining the National Foundation for Ectodermal Dysplasias. Find out why the NFED is where you belong!
Pediatric Dermatologist Dedicates 26 Years to the NFED Family
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
A Seventh Grader’s Tips for a Great School Year
Laurel is a 12-year-old girl with ectodermal dysplasia who wants to share her school experience with other affected kids. Learn what she has to say about teaching teachers, having an IEP, managing PE and handling bullies.
We Reached New Heights Together at Family Conference
Our NFED family gathered in Colorado, for a weekend filled with educational workshops, research updates, and dental evaluations along with hugs, laughter and some tears. Mary Fete thinks it just may have been the best yet! Read about the impact, see the photos and learn where next year’s Family Conference will be!