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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Goltz Research

Criteria for Goltz Research Conference

Sign Up to Participate


Families affected by Goltz syndrome (aka focal dermal hypoplasia, FDH) are invited to participate in this conference, officially titled “Growth Arrest in Focal Dermal Hypoplasia.”  This research is a collaborative effort from investigators at the University of Colorado Health School of Medicine, Baylor College of Medicine, the University of Missouri-Columbia School of Medicine, and the NFED, and is partially funded by the NFED.

The first aim of the study is to evaluate pituitary function as it might relate to short stature in individuals affected by Goltz syndrome. The second aim is to evaluate nutritional status in individuals affected by Goltz syndrome and to evaluate possible gastrointestinal causes for growth failure in individuals with Goltz syndrome

If you are interested in participating in this important research study or have any questions, please contact Mary Fete at the NFED at 618-566-2020 or email her.

Hotel Information

If you would like to stay in Denver, we have booked a block of rooms at the following:
Springhill Suites by Marriott Denver at Anschutz Medical Campus
13400 East Coalfax Avenue
Aurora, CO  80011
$139 special rate (plus taxes)
Reservations should be made by 06/21/2015 via online booking link or call 702-859-1100 to get the special group discounted rate.

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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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