The NFED is proud to have funded the first comprehensive investigation of the natural course of XLHED, the most common ectodermal dysplasia, from birth until the age of five years.
Findings from this Natural History Study were recently published in the Orphanet Journal of Rare Diseases. Read more to learn what they found and how the data will be used for the upcoming clinical trial.
Big Plans for 2020
The NFED has new things in store for the ectodermal dysplasias community in 2020. Find out what we have planned and how you can be a part of it.
Free Ectodermal Dysplasia Webinars
We are excited to announce our webinar series for 2020: Conference from your Couch! Join us on the second Wednesday of every other month in 2020 at 7 p.m. central for FREE webinars to learn more about ectodermal dysplasias, symptoms, treatments and research.
It’s In Your Hands
Lynne Thomas knew that ectodermal dysplasia affected hair, teeth and sweat glands. But a series of life experiences raised questions about her grip and fingerprints. Learn more about these unique syndromes.
ELSA Gets Its First Hearing in the House
The Ensuring Lasting Smiles Act will get its first hearing in the House of Representatives. Kevin Koser will testify on behalf of individuals affected by congenital anomalies. Learn how you can help at this critical time.
Teen Advocate Wins Award
A teenager from Wisconsin captures national award for his courage to share his struggles with ectodermal dysplasias and create change.
First In Our Family
Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.
Dr. Albert Guckes: A Dentist With a Big Heart
Back in the 1980s, a prosthodontist named Dr. Albert D. Guckes became interested in the ectodermal dysplasias. He speculated that dental implants might be a viable treatment for affected adults who were missing teeth. His landmark study would impact generations to come with what they learned. We not only thank Dr. Guckes for this study but for what he did for the next three decades to help our families.