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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Take Advantage of Free Webinars on Ectodermal Dysplasias Topics

Webinars are 60-minute educational and interactive workshops on a single topic related to ectodermal dysplasias. They are free.

What We Have Learned From The Ectodermal Dysplasias International Registry

Presenter – Mary Fete, R.N., M.S.N., C.C.M

Have you ever wondered how many other people with XLHED have nail problems? Or, what percentage of people affected by EEC experience hearing issues?  MaryFete will teach you how to use the Ectodermal Dysplasias International Registry to find these answers and access other information to learn more about the ectodermal dysplasias. 

She will explain…

  • what the Registry is;
  • how to set up your own patient profile;
  • how you can access information in it;
  • how the Registry will help advance ectodermal dysplasia research;
  • what we have learned about the ectodermal dysplasias from the Registry.

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Bite Into This:  Dental Implants

Presenter – Clark M. Stanford, D.D.S., Ph.D.

Learn about dental implants and modern concepts of dental implant materials. Find out at what age you should consider having dental implants and what are the risks and benefits of dental implants.

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Focusing on Focal Dermal Hypoplasia (aka Goltz syndrome)

Presenters - V. Reid Sutton, M.D. and Ignatia B. Van den Veyver, M.D.

Focal dermal hypoplasia is a type or ectodermal dysplasia that is also known as Goltz syndrome or Goltz-Gorlin syndrome. Drs. Sutton and Van den Veyver will talk about the various symptoms affected patients experience, treatment options and the latest research.  Richard Alan Lewis M.D., M.S., an ophthalmologist, Elaine Siegfried, M.D., a pediatric dermatologist,  and Dee Dee Olsen, the  mother of a child affected by Goltz syndrome will also participate and answer questions.

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Women’s Health Study – The Results Are In!

Presenter – Jill Powell, M.D.

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How to Treat Nasal Rocks, Ear Wax and Other Ear, Nose and Throat Issues

Presenter – Raj Sindwani, M.D.

Dr. Sindwani will discuss nasal crusts, nose bleeds, sinus drainage, remedies for moisturizing the nasal passages and your other ENT concerns as they relate to the ectodermal dysplasias.

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Listen to Recordings of Past Topical Conference Calls

From 2011:

EDI200 (X-Linked HED Treatment) Update

Hair and Nail Concerns related to the Ectodermal Dysplasias

Adolescent Dental Concerns

From 2010:

Chat With Mary Kaye Richter

Skin, Hair and Nails Concerns in the Ectodermal Dysplasias

EDI200 (X-Linked HED Treatment) and NFED Patient Registry

Navigating the Medical Insurance Process for Dental Treatment Related to Ectodermal Dysplasia

General Pediatric Concerns (Including Information on the H1N1 Virus)

School Accommodation Plans

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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.
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