Scientific Meetings

The NFED sponsors scientific meetings to...

Scientific Meetings
2008 International Conference on Ectodermal Dysplasias Classification
2008 Grand Rounds at University of Iowa - Coming Soon
2008 Dental Symposium at University of Iowa - Coming Soon

Summaries of Past Scientific Meetings
International Research Symposium on Ankyloblepharon-Ectodermal Defect-Cleft Lip and/or Palate (AEC) Syndrome

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International Conference on Ectodermal Dysplasias Classification
March 10-12, 2008
Charleston, South Carolina

Conference Chair
Carlos F. Salinas, DMD
College of Dental Medicine
Medical University of South Carolina

Conference Coordinator
Mary Fete, RN, MSN
Director of Research
National Foundation for Ectodermal Dysplasias

Researchers and clinicians from around the world will convene at this meeting to reach a consensus definition of ectodermal dysplasia and to develop a classification system for isolated and syndromic types of ectodermal dysplasia. Participation in this conference is by invitation only.

Questions? Contact Mary Fete.

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International Research Symposium on Ankyloblepharon-Ectodermal Defect-Cleft Lip and/or Palate (AEC) Syndrome

In November of 2006, 23 individuals traveled from as far away as New York and Argentina to participate in the International Research Symposium on Ankyloblepaharon-Ectodermal Defect-Cleft Lip and/or Palate (AEC) Syndrome. The workshop was sponsored by the National Foundation for Ectodermal Dysplasias (NFED) and the Department of Dermatology at Texas Children’s Hospital/Baylor College of Medicine. The symposium focused not only on skin erosion but all symptoms manifested in AEC syndrome (also known as Hay-Wells syndrome), which is one of 150 ectodermal dysplasia syndromes.

The event was a follow-up meeting to an NFED Skin Erosion Workshop held at Saint Louis University in 2003. The goal of the 2006symposium was to direct future research into understanding and treating AEC and especially skin erosion. Their findings could literally save the lives of children who are born with severely eroded skin.

The goals of this conference were to develop a uniform and coordinated protocol to the diagnosis of patients with AEC and to establish a coordinated approach to obtain natural history information (with focus on the dermatologic, ophthalmologic, otolaryngologic, gastrointestinal, dental, growth, development, nutrition, audiologic and cognitive manifestations of AEC), treatment outcomes data, and tissue samples to facilitate coordinated basic and translational research.

On Wednesday, November 8th physicians from 11 disciplines evaluated 23 individuals affected by AEC, ranging in age from four months to 30 years. Skin biopsies and blood draws were included in these evaluations. This data will be analyzed in a systematic fashion to better learn how AEC affects individuals.

To date, the researchers have identified the gene mutation in 19 of the 25 people who donated blood.

On Thursday, November 9th, the AEC-affected children participated in a Dermatology Grand Rounds with 60 dermatology professionals from the Houston area and 15 doctors and researchers invited from around the world. In the afternoon, the invited researchers presented their data on molecular genetics, pathology and pathophysiology as it relates to AEC syndrome. Friday, November 10th, concluded the symposium with the researchers in round table discussions discussing what had been learned and identifying future research directions.