National Foundation for Ectodermal Dysplasias

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

CALL US AT (618) 566-2020

We're here to help

Board of Directors and Councils


Board of Directors

Anil Vora - President
George Barbar - Vice President
Jack Kriz - Secretary
Brian Randall - Treasurer
Liz Arro
Rick Emery
Frank Farrington
David Freestone
Ruth Geismar
John Stith
Sarah Tevis Poteet
Mary Kaye Richter - Honorary Member


Family Support Council

Da'Nella Anderson
Christopher Buerman
Julie Claeys
Andrew James
Jack Kriz
Terri Matus


Patient Care Council

University of North Carolina Chapel Hill
Albert D. Guckes, D.D.S., M.S.D.
University of Pennsylvania School of  Dental Medicine
Jonathan Korostoff, D.M.D., Ph.D.
University of Missouri at Kansas City School of Dentistry
Leonard Lausten, D.D.S.
Saint Louis University School of Medicine
John Stith, M.D.
Tufts University School of Dental Medicine
Thomas Vergo, Jr., D.D.S.


Scientific Advisory Council

University of Illinois - Chicago School of Dentistry
Clark Stanford, D.D.S., Ph.D.
A Children's House for Pediatric Dermatology
Alanna F. Bree, M.D.
Liaison from the Board of Directors
Retired from Virginia Commonwealth University School of Dentistry
Frank H. Farrington, D.D.S., M.S.
University of Missouri Internal Medicine and Pediatrics - Woodrail
Clayton Butcher, M.D.
University of Missouri-Columbia School of Medicine
Timothy J. Fete, Sr., M.D., M.P.H.
Saint Louis Children’s Hospital
Dorothy Katherine Grange, M.D.
Baylor University
Brody J. Hildebrand, D.D.S.
University of Colorado Denver
Maranke I. Koster, Ph.D.
Baylor College of Medicine
Richard A. Lewis, M.D., M.S.
Baylor College of Medicine
Pilar L. Magoulas, M.S., C.G.C.
University of California at San Francisco
Anubhav Mathur, M.D., Ph.D.
Baylor College of Medicine
Kathleen Motil, M.D., Ph.D.
University of Iowa
Lina M. Moreno Uribe, D.D.S., Ph.D.
St. Mary’s Health Center
Jill Powell, M.D.
Saint Louis University School of Medicine
Elaine C. Siegfried, M.D.
Cleveland Clinic, Head and Neck Institute
Raj Sindwani, M.D., F.A.C.S., F.R.C.S.
University of North Carolina Chapel Hill
Margo B. Stein, Ph.D.
University of North Carolina Chapel Hill
J. Timothy Wright, D.D.S., M.S.

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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360