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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XLHED Women’s Forum


Edimer Pharmaceuticals will host a Women’s Forum for ladies who are carriers of x-linked hypohidrotic ectodermal dysplasia (XLHED) on Wednesday, July 23 prior to the NFED National Family Conference in Columbus, Ohio.  The forum will take place from 9 a.m. – noon with conference registration beginning at 3 p.m.

Hypohidrotic ectodermal dysplasia (HED) is characterized by a reduced ability to sweat, missing teeth, and fine sparse hair.  Are you not sure if the type of HED that affects you and your family is x-linked? We encourage you to attend. You can learn more about the XLHED Global GeneScreen Project, a program that offers free genetic testing for women who qualify.

Connect With Other Women

The Women’s Forum will give you an opportunity to share your experience and connect with other women who are carriers of XLHED.  This forum will build a strong community of women whose connections will continue beyond the event.

Learn More About XLHED

You will learn about:

  • how XLHED can affect women physically and emotionally,
  • the importance of family pedigrees,
  • data from the NFED Women’s Survey,
  • an update on Edimer’s EDI200 clinical trial for a potential treatment for XLHED,
  • services for families affected by XLHED, and
  • more!


The Women’s Forum and the National Family Conference will be held at the DoubleTree by Hilton Columbus-Worthington, Columbus, Ohio. You can register for the XLHED Women’s Forum online, or by completing the registration form that you received by mail.

Do You Need Financial Assistance?

There are some scholarship funds available for travel. Email Kelley Atchison or call her at 618-566-6873 for more information. 

Share this information with any woman in your family – mom, sister, cousin, aunt, niece - who is a carrier of XLHED. They are all invited to attend. We look forward to seeing you in July!  

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