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About Us

History of NFED

In 1981, Mary Kaye Richter and 12 other families affected by ectodermal dysplasia organized and founded the National Foundation for Ectodermal Dysplasias (NFED). In its first years, the NFED gathered and published accurate information on the conditions and established a support network of affected families. In 1985, the Foundation expanded its mission to funding seed grants for ectodermal dysplasia research and providing researchers with access to clients.  Two years later, the Foundation began providing financial assistance for medical and dental care through the Treatment Fund, which is now called the Treatment Assistance Program. In 1995, the L. Marie Heard Education Scholarship Program was established to help affected individuals attain post secondary education and the Dental Implant Program began.

The NFED has grown considerably since the early 1980s, a time when little was known about the rare conditions and the medical literature cited only a half dozen affected individuals in the United States. Today, more than 5,800 families in more than 70 countries are in touch with the Foundation.  In 1996, a successful International Symposium on the Ectodermal Dysplasias was held at the National Institutes of Health.  A 2002 Skin Erosion Workshop co-sponsored by Saint Louis University described the often life threatening condition experienced by children affected by Ankyloblepharon-Ectodermal Dysplasia-Clefting (AEC) syndrome and outlined treatment protocols. An expanded International Research Symposium on AEC in 2006 with Texas Children’s Hospital and Baylor College of Medicine co-sponsoring enabled us to collect extensive data, biopsies and hair samples on 25 individuals affected by AEC for analysis and research.  During the past 28 years, the NFED has funded more than $1 million in research at 40 centers around the world.  Funded research projects have identified genes for several ectodermal dysplasias.

Helping affected families access quality and affordable oral health care has been an ongoing focus at the NFED. In the early years, it meant providing information to families that children could successfully wear dentures. Over the years, efforts expanded to educating professionals, maintaining a database of names of care providers and funding treatment.  Thousands of copies of NFED publications have been mailed to professionals and professional symposia on the ectodermal dysplasias. The NFED has provided clients with more than $1 million in assistance for needed care as well as hair prosthetics and air conditioners.

To reach its goals, the NFED has collaborated with many professional organizations such as the American Academy of Dermatology, Friends of the National Institute of Dental and Craniofacial Research, National Oral Health Information Clearinghouse, and Society for Investigative Dermatology. In addition, the Foundation is affiliated with the Coalition of Skin Diseases, the Genetic Alliance, National Health Council, the National Organization of Rare Disorders and Research!America.

The NFED is proud of all of its accomplishments. Perhaps our greatest success comes from providing individuals and families affected by ectodermal dysplasias with a place to turn for reliable information, support and hope.

Who We Are

The mission of the NFED is to empower and connect people touched by ectodermal dysplasias through education, support, and research.    Located in Mascoutah, Illinois, the Foundation is in contact with more than 5,800 families in more than 72.  $.79 of every dollar raised is spent on education, support, treatment and research.  The NFED is a private, tax-exempt, not-for-profit organization pursuant to section 501(c)(3) of the Internal Revenue Code.

Ectodermal Dysplasias International Registry Host and Partners

Host:
  • National Foundation for Ectodermal Dysplasias
Partners:
  • Innolyst, Inc.
  • Edimer Pharmaceuticals
  • Australia - ozED
  • Austria/Germany - Selbsthilfegruppe Ektodermale Dysplasie
  • Belgium
  • Denmark - Ectodermal Dysplasia Denmark
  • France - Associacion Francaise Dysplasias Ectodermiques (AFDE)
  • Italy - Associazione Nazionale Displasia Ectodermica (A.N.D.E.)
  • Mexico - Asociacion Mexicana de Displasia Ectodermica
  • Netherlands/Belgium/Luxemborg - Ectodermal Dysplasia the Netherlands
  • Norway - Norsk ED-forening
  • Spain - Asociacion de afectados por displasia ectodermica (A.A.D.E.)
  • Sweden - Svenska Ed-foreningen
  • Turkey - Ektodermal Displazi Grubu – Turkiye
  • United Kingdom - Ectodermal Dysplasia Society

Ectodermal Dysplasias International Registry Advisory Board

  • Alanna F. Bree, M.D., Dermatology Specialists of Houston, Houston, Texas
  • Kyle Brown, CEO, Innolyst, Inc., San Mateo, California
  • Mary Fete, R.N., M.S.N., C.C.M., NFED Director of Research
  • Kathleen J. Motil, M.D. Ph.D, Children's Nutrition Research Center, Houston, Texas
  • Carlos Salinas, D.M.D., F.A.C.D., College of Dental Medicine, Medical University of South Carolina.
  • Clark Stanford, D.D.S., Ph.D., The University of Iowa, Iowa City, Iowa
  • J. Timothy Wright, D.D.S., M.S., University of North Carolina School, Chapel Hill, North Carolina

NFED Scientific Advisory Council

  • Alanna F. Bree, M.D., Dermatology Specialists of Houston, Houston, Texas
  • Timothy J. Fete, Sr., M.D., M.P.H., University of Missouri-Columbia School of Medicine, Columbia, Missouri
  • Dorothy K. Grange, MD, Washington University School of Medicine, St. Louis, Missouri
  • Brody J. Hildebrand, D.D.S., M.S., Preston Hollow Specialists, Houston, Texas
  • Maranke I. Koster, Ph.D., Regenerative Medicine and Stem Cell Biology Program, Denver, Colorado
  • Richard A. Lewis, M.D., M.S., Baylor College of Medicine, Houston, Texas
  • Kathleen J. Motil, M.D. Ph.D, Children's Nutrition Research Center, Houston, Texas
  • Jill K. Powell, MD, St. Mary's Health Center, St. Louis, Missouri
  • Elaine Siegfried, MD, Saint Louis University/Cardinal Glennon Children's Hospital, St. Louis, Missouri
  • Raj Sindwani, B.Sc. (HON), M.D., FRCS(C) The Cleveland Clinic, Beachwood, Ohio
  • Clark Stanford, D.D.S., Ph.D., The University of Iowa, Iowa City, Iowa
  • Margo B. Stein, Ph.D., University of North Carolina School of Dentistry, Chapel Hill, North Carolina
  • Lina M. Moreno Uribe, D.D.S., Ph.D., The University of Iowa, Iowa City, Iowa
  • J. Timothy Wright, D.D.S., M.S., University of North Carolina School, Chapel Hill, North Carolina