Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 40 years.
Lionel Learns What Matters Most Published
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.
First Ectodermal Dysplasias Awareness Month Held
Access to Oral Health Care for Individuals Affected by Ectodermal Dysplasias Conference
The NFED convenes dental experts to identify obstacles to oral health care and solutions for individuals with ectodermal dysplasias.
Budget Exceeds $1 Million
Funding from the Halloween Bash enables NFED to expand research, treatment and program support.
International Conference for Ectodermal Dysplasias Classification Held
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.
Largest Gathering of Families in History To Date
351 people attended Family Conference in Williamsburg, Virginia.
Ectodermal Dysplasias International Registry Launched
The Registry is created to help advance ectodermal dysplasias research and alert patients to clinical trials.
NFED Founder Mary K. Richter Retires
Mary Kaye served as executive director for 30 years.
Newborn XLHED Clinical Trial Begins
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.
Mary Fete Becomes Executive Director
Today, Mary Fete leads the NFED and carries out the vision that the first dozen families had back in 1981: to be a resource for the ectodermal dysplasias community and to assure its families that they are never alone!
Goltz Syndrome Research Project
Sixteen individuals participate creating growth data on the largest group of children with Goltz. It led to the finding that confirmed short stature as part of the syndrome and identified underlying treatable causes.
Three Babies With XLHED Treated and Develop Sweat Glands
Preliminary data shows that three babies with XLHED develop normal sweat glands after receiving in-utero treatment with ER-OO4 protein.
First Advocacy Day on Capitol Hill
175 people stormed Capitol Hill to educate legislators about ectodermal dysplasias and their need for health benefits for medical and dental care.
The Ensuring Lasting Smiles Act First Introduced in Congress
This federal bill would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care and medical care.
Family Conference Canceled Due to Pandemic
The NFED hosted its first-ever virtual Kays’ Kids Camp.
International Ectodermal Dysplasias Research Conference Held in North Carolina
Researchers and scientists from around the world participated in a landmark meeting. They prioritized research needs and created plan to collaborate.
Phase II Clinical Trial for XLHED Begins in Germany
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.
Webinar Series Enables Virtual Education