National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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Research News

Free Genetic Counseling Services and Testing

April 02, 2015

InformedDNA continues to provide free genetic counseling to families affected by HED or XLHED or who suspect they are. Schedule your appointment today.

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Nine Babies Have Received EDI200 in XLHED Newborn Clinical Trial

April 02, 2015

The XLHED Newborn Clinical Trial which enrolled its first baby in the fall of 2013, has now had eight babies from around the world participate.

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FaceBase2 3-D Imaging Study

April 02, 2015

The Facebase 3D Imaging Study is a research project conducted through the University of California, San Francisco; the University of Colorado, Denver; and the University of Calgary in Canada. The study aims to improve the accuracy and speed of how genetic syndromes are diagnosed.

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Q and A from XLHED Women’s Day 2014

August 14, 2014

Edimer Pharmaceuticals hosted the XLHED Women's Day in Columbus in conjunction with the NFED Family Conference. Following is a Q and A from that event. 

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Answering Your Questions about the Adults with XLHED Study

November 28, 2012

Participants asked the following questions on a webinar that the NFED hosted in August regarding Edimer Pharmaceuticals’ Adults with XLHED Study. Edimer provided the answers. To read more of the Q and A and listen to the webinar, go to our website under research news.

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Women’s Survey Results Help Us Understand Female-Specific Issues

November 28, 2012

The results are in! The NFED sponsored a survey to further characterize female-specific issues and their possible connection to ectodermal dysplasias.

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Studying Focal Dermal Hypoplasia Using Stem Cells

November 28, 2012

We have collected skin biopsies from five individuals with Goltz syndrome and are awaiting an additional four biopsies. After several weeks of growing these skin biopsies in a dish in the laboratory we obtained several million cells, some of which we have frozen for long-term storage. 

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Goltz Families Needed to Participate in Major Research Conference

November 28, 2012

In 2013, we will sponsor a research conference dedicated to Goltz syndrome in conjunction with Baylor College of Medicine & Texas Children's Hospital. 

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Characterization of A Novel Conditional Mouse Model For AEC Syndrome

November 28, 2012

AEC syndrome is caused by mutations in the p63 gene, encoding for a protein that plays an essential role in early development. The p63 protein is a transcription factor, which means that it attaches (binds) to DNA and controls the activity of several genes involved in development of several ectodermal structures, such as the skin, hair, teeth, nails, and also the palate epithelium. The p63 gene mutations responsible for AEC syndrome interfere with the ability of p63 to turn target genes on and off at the right times.

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Toward A Cure for Skin Erosions in AEC Patients

November 28, 2012

Ankyloblepharon ectodermal dysplasia and clefting (AEC) syndrome is an ectodermal dysplasia characterized by skin fragility, often causing the skin to erode. Currently, there is no cure for skin erosions in AEC patients. Our goal is to develop a novel approach for treating skin erosions in AEC patients. 

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