Join us as we take a stroll down memory lane and explore some of our major accomplishments over the past 45 years.

NFED History

2003
October 1
Lionel Learns What Matters Most Published
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.
2004
February 1
First Ectodermal Dysplasias Awareness Month Held
October 18
Access to Oral Health Care for Individuals Affected by Ectodermal Dysplasias Conference
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.

2005
December 31
Budget Exceeds $1 Million

Funding from the Halloween Bash enables NFED to expand research, treatment and program support.

2008
March 10
International Conference for Ectodermal Dysplasias Classification Held
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.

2009
July 23
Largest Gathering of Families in History To Date
Largest Gathering of Families in History To Date

351 people attended Family Conference in Williamsburg, Virginia.

2010
March 1
Ectodermal Dysplasias International Registry Launched
Ectodermal Dysplasias International Registry Launched

The Registry is created to help advance ectodermal dysplasias research and alert patients to clinical trials.

December 31
NFED Founder Mary K. Richter Retires
NFED Founder Mary K. Richter Retires

Mary Kaye served as executive director for 30 years.

2013
October 9
Newborn XLHED Clinical Trial Begins
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.

2014
January 1
Mary Fete Becomes Executive Director
Mary Fete Becomes Executive Director
2015
July 22
Goltz Syndrome Research Project
Goltz Syndrome Research Project

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.

2016
December 7
Three Babies With XLHED Treated and Develop Sweat Glands
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.

2017
July 19
First Advocacy Day on Capitol Hill
First Advocacy Day on Capitol Hill

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.

2018
August 23
The Ensuring Lasting Smiles Act First Introduced in Congress
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.

2020
June 22
Family Conference Canceled Due to Pandemic
Family Conference Canceled Due to Pandemic

The NFED hosted its first-ever virtual Kays’ Kids Camp.

2021
October 21
International Ectodermal Dysplasias Research Conference Held in North Carolina
Three people, including Dr. Butcher, sit at a Conference table at a meeting.

Researchers and scientists from around the world participated in a landmark meeting. They prioritized research needs and created plan to collaborate.

November 16
Phase II Clinical Trial for XLHED Begins in Germany
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 who are now sweating normally and have other improved symptoms.

2022
January 1
Serving 10,000 Affected Individuals

The NFED welcomes its 10,000th individual affected by ectodermal dysplasia.

January 1
Prevalence Rates Established
Prevalence Rates Established

The NFED conducts largest study to date on prevalence rates for 7 types of ectodermal dysplasias and publishes the results. 

January 1
Webinar Series Enables Virtual Education
Webinar Series Enables Virtual Education

Families learn from medical and dental experts through online webinars.