Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 45 years.
NFED History
Alice Geismar wrote this children’s storybook about Lionel who is different from the other lion cubs, and that makes him sad. But over the course of this heart-warming story, Lionel learns that what’s on the inside is more important than a bushy mane. Anyone who’s ever felt different will relate to Lionel and be inspired by his story.
The NFED convenes dental experts to identify obstacles to oral health care and solutions for individuals with ectodermal dysplasias.
Researchers and physicians from around the world convened at the International Conference for Ectodermal Dysplasias Classification to develop new system for classifying the ectodermal dysplasias.
351 people attended Family Conference in Williamsburg, Virginia.
The Registry is created to help advance ectodermal dysplasias research and alert patients to clinical trials.
Edimer Pharmaceuticals doses 10 newborn males with a therapy called EDI200 (presently named ER-OO4). Ultimately, findings show that the treatment was not effective given after birth.
Sixteen individuals participate, creating growth data on the largest group of children with Goltz. It confirmed short stature as part of the syndrome and identified underlying treatable causes.
Preliminary data shows that three babies with XLHED develop normal sweat glands after receiving in-utero treatment with ER-OO4 protein.
175 people gathered on Capitol Hill to educate the U.S. Congress about ectodermal dysplasias and their need for health benefits for medical and dental care.
This federal bill would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care and medical care.
Researchers and scientists from around the world participated in a landmark meeting. They prioritized research needs and created plan to collaborate.
EspeRare and Pierre Fabre begin Edelife, a phase II clinical trial for XLHED, with site in Germany. Purpose is to confirm Dr. Holm Schneider’s findings from treating three babies prenatally with ER-004 who are now sweating normally and have other improved symptoms.
The NFED conducts largest study to date on prevalence rates for 7 types of ectodermal dysplasias and publishes the results.
Families learn from medical and dental experts through online webinars.